{"id":762,"date":"2018-05-07T13:47:30","date_gmt":"2018-05-07T13:47:30","guid":{"rendered":"https:\/\/simonsvipcms.wordpress.com\/?page_id=762"},"modified":"2025-03-10T14:05:21","modified_gmt":"2025-03-10T18:05:21","slug":"frequently-asked-questions","status":"publish","type":"page","link":"https:\/\/www.simonssearchlight.org\/frequently-asked-questions\/","title":{"rendered":"Frequently Asked Questions"},"content":{"rendered":"<h2>About <span class=\"notranslate\">Simons Searchlight<\/span><\/h2>\n<div class=\"simons-accordion-wrap\"><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What is the purpose of <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> ?<\/p>\n<\/div><div class=\"acc-bottom\"><p><span class=\"notranslate\">Simons Searchlight<\/span> is a research program that studies rare genetic neurodevelopmental disorders. You can:<\/p>\n<ul>\n<li>Learn how you or your child compare to others in your genetic community through summary reports and presentations<\/li>\n<li>Receive gift cards for completing surveys<\/li>\n<li>Connect with others who have your diagnosis through our Facebook community and by attending conferences<\/li>\n<li>Make a difference by contributing information:<br \/>\n&#8211; to help develop care guidelines for patients<br \/>\n&#8211; for research that will help you and future families<\/li>\n<li>Be invited to participate in new studies of the natural history or treatment of your genetic disorder<\/li>\n<\/ul>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Who can join <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span>?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Anyone in the world with a confirmed diagnosis of a genetic disorder that we study can join <span class=\"notranslate\">Simons Searchlight<\/span>. Biological parents and full biological siblings can also participate. If the person who has the genetic variant is under 18 years old, their biological or adoptive parent or guardian will need to create an account to begin participation.<\/p>\n<p><span class=\"notranslate\">Simons Searchlight<\/span> is currently available in English, Dutch, French, and Spanish, but more languages are on the way, including Italian, German, and Portuguese.<\/p>\n<p>For the list of genes that we study, please check our website: <a href=\"https:\/\/www.simonssearchlight.org\/research\/what-we-study\/\">https:\/\/www.simonssearchlight.org\/research\/what-we-study\/<\/a>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Why should I participate in <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span>?<\/p>\n<\/div><div class=\"acc-bottom\"><p>The genetic disorders in <span class=\"notranslate\">Simons Searchlight<\/span> are considered rare. In order to learn about how these genetic conditions cause different neurodevelopmental disorders, we need\u00a0<em>more<\/em> information. The more people who participate, the more likely we are to help researchers make discoveries that improve the lives of those who have these conditions. In addition, if you or your child has a unique gene variant we encourage you to participate, to make sure scientists have information specifically about you.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Who pays for <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span>?<\/p>\n<\/div><div class=\"acc-bottom\"><p><span class=\"notranslate\">Simons Searchlight<\/span> is funded by the <span class=\"notranslate\">Simons Foundation<\/span>, a non-profit that provides funding in the areas of math and science research. <span class=\"notranslate\">Simons Searchlight<\/span> is one of many research studies that are supported by the <span class=\"notranslate\">Simons Foundation<\/span>. <span style=\"font-weight: 400;\">You can find more information on our <\/span><a href=\"https:\/\/www.simonssearchlight.org\/about\/sfari-programs\/\"><span style=\"font-weight: 400;\">SFARI programs web page<\/span><\/a><span style=\"font-weight: 400;\">.<\/span><\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How do patient advocacy organizations partner with <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> ?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Patient advocacy organizations have different levels of involvement with <span class=\"notranslate\">Simons Searchlight<\/span>. Some organizations engage with us online through email and social media. Others organize conferences that bring families and researchers together and allow the <span class=\"notranslate\">Simons Searchlight<\/span> team to present updated results.<\/p>\n<p>Patient advocacy organizations are pivotal to driving forward research in rare genetic disorders by connecting with qualified researchers. These researchers can request access to de-identified <span class=\"notranslate\">Simons Searchlight<\/span> data at no cost through SFARI Base, the <span class=\"notranslate\">Simons Foundation<\/span> Autism Research Initiative\u2019s secure online repository. We have also established a Community Advisory Committee, or CAC, that periodically surveys participants for feedback. We welcome comments by email at <a href=\"mailto:coordinator@simonssearchlight.org\">coordinator@simonssearchlight.org<\/a>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What is the relationship between <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span>, pharmaceutical companies, and other industries?<\/p>\n<\/div><div class=\"acc-bottom\"><p>The <span class=\"notranslate\">Simons Foundation<\/span> maintains a neutral research space for both academic researchers and for-profit companies, with the goal of supporting early data sharing in a non-competitive space\u00a0 to accelerate scientific progress. Qualified researchers are eligible to request data and samples, regardless of whether they work for a non-profit or for-profit institution. The <span class=\"notranslate\">Simons Foundation<\/span> does not accept funding or any other payments from pharmaceutical companies or from any other for-profit, non-profit, or not-for-profit companies.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What information is collected from me?<\/p>\n<\/div><div class=\"acc-bottom\"><p><span class=\"notranslate\">Simons Searchlight<\/span> collects basic information about you and your family, and genetic information from genetic lab reports that you upload when you register. We also collect medical history information on behavior, communication, motor skills, and more through surveys assigned on your dashboard.<\/p>\n<p>When your information is released to scientists, all of your personally identifying information is removed. Personal identifying information includes names, birthdays, addresses, and any other information that could readily identify you.<\/p>\n<p>Learn more on our &#8216;Data and Biosamples&#8217; <a href=\"https:\/\/www.simonssearchlight.org\/data-biospecimens\/\">webpage<\/a>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What information is given back to me?<\/p>\n<\/div><div class=\"acc-bottom\"><p>For some surveys, we provide individualized survey results based on your answers to help you understand how your child\u2019s features compare to others who have the same genetic disorder. We also regularly provide summary reports for genetic disorders with at least 10 participants. These summary reports can be found on the web page for your genetic disorder. Find your genetic condition on our <a href=\"https:\/\/www.simonssearchlight.org\/research\/what-we-study\/\">list<\/a>. Finally, our staff are available to present detailed research summaries at your meetings and conferences.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Can I get my data back?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Certainly! We offer regular summary information for genetic groups that have at least ten families with available data, known as &#8216;quarterly reports.&#8217; Additionally, we provide personalized survey result summaries to assist families in comprehending how their features, or those of their child, compared to others with the same genetic disorder.<\/p>\n<p>However, <span class=\"notranslate\">Simons Searchlight<\/span> does not generally send source data back to participants or patient advocacy organizations.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Will I receive a gift card for participating?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Yes. As a way to reward you for your time, when you complete tasks for <span class=\"notranslate\">Simons Searchlight<\/span>, you will receive online rewards. Any online rewards you earn can be redeemed through the Rewards feature on your account dashboard.<\/p>\n<p>Access your <a href=\"https:\/\/research.simonssearchlight.org\/login\">dashboard<\/a> and view our webinar on how to claim your gift cards below.<\/p>\n<iframe loading=\"lazy\" title=\"YouTube video player\" src=\"https:\/\/www.youtube.com\/embed\/doWqQ2aY1zE?si=De5vqclOXoA-ZE3K\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p><a id=\"reg\" name=\"reg\"><\/a>How long will <span class=\"notranslate\">Simons Searchlight<\/span> last?<\/p>\n<\/div><div class=\"acc-bottom\"><p>The <span class=\"notranslate\">Simons Foundation<\/span> is committed to the long-term success of <span class=\"notranslate\">Simons Searchlight<\/span>. There are no plans to discontinue <span class=\"notranslate\">Simons Searchlight<\/span>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How do researchers access my data?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Scientists can apply to access your data and samples through the <span class=\"notranslate\">Simons Foundation<\/span> Autism Research Initiative (SFARI) Base. More information on available data and samples can be found on the <a href=\"https:\/\/www.sfari.org\/\">SFARI <\/a><a href=\"https:\/\/www.sfari.org\/\">website<\/a>. Instructions for scientists on how to download data can be found at <a href=\"http:\/\/base.sfari.org\/\">SFARI Base<\/a>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What makes <span class=\"notranslate\">Simons Searchlight<\/span> different from other patient registries?<br \/>\n<a id=\"consent\" name=\"consent\"><\/a><\/p>\n<\/div><div class=\"acc-bottom\"><p>The secure funding and experienced staff make <span class=\"notranslate\">Simons Searchlight<\/span> a unique resource for families and researchers. We have a biorepository, or blood bank, where we create and store different kinds of samples that researchers can use to help better understand genetic disorders. <span class=\"notranslate\">Simons Searchlight<\/span> also encourages researchers to study across different gene groups.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>My genetic condition is not on the <span class=\"notranslate\">Simons Searchlight<\/span> Gene List. How can my condition to be added?<\/p>\n<\/div><div class=\"acc-bottom\"><p><span class=\"notranslate\">Simons Searchlight<\/span> currently studies over 170 genes that cause rare neurodevelopmental disorders, and our list is always expanding! Currently, the <span class=\"notranslate\">Simons Searchlight<\/span> gene list contains 156 gene changes and 24 copy number variants (CNV) that are known to be associated with autism and other neurodevelopmental disorders.<\/p>\n<p>In order for a new gene or copy number variant (CNV) to be added to our list, variants in the gene or CNV need to be strongly linked to neurodevelopmental disorders like autism or developmental delays. Our medical genetics committee meets quarterly to review new genes and CNVs. If your or your child&#8217;s gene or CNV is not on our list, please fill out our <a href=\"https:\/\/forms.gle\/tYmdpfUsaw3Ff4zn7\" target=\"_blank\" rel=\"noopener\">Gene List Addition Request Form<\/a>, to be considered by our genetics committee.<\/p>\n<p>Once a decision is made, you will be notified.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How do I create or add my CRID to my <span class=\"notranslate\">Simons Searchlight<\/span> profile?<\/p>\n<\/div><div class=\"acc-bottom\"><p style=\"text-align: left;\">The ability to connect participant data across multiple sources is crucial for working together on rare diseases. CRIDs (Clinical Research IDs) are a tool to make this connection. They give individuals in research a unique universal ID, making it simpler for doctors, scientists, and patients to centrally share and access information to collaborate effectively as a team.<\/p>\n<p style=\"text-align: left;\"><strong>Creating a CRID for yourself or a family member is simple. Just follow these steps:<\/strong><\/p>\n<ul style=\"text-align: left;\">\n<li aria-level=\"1\">Go to\u00a0<a href=\"http:\/\/thecrid.org\/\">TheCRID.org<\/a>\u00a0and freely make a unique identifier using 8 letters or numbers (but not 1, 0, I, O, or L).<\/li>\n<li aria-level=\"1\">Once you\u2019re registered, you can share your CRID with medical providers or research studies like\u00a0<span class=\"notranslate\">Simons Searchlight<\/span>\u00a0(learn more below).<\/li>\n<\/ul>\n<p style=\"text-align: left;\"><strong>If you\u2019re part of\u00a0<span class=\"notranslate\">Simons Searchlight<\/span>, adding your optional CRID is easy too. Just follow these steps:<\/strong><\/p>\n<ul>\n<li style=\"text-align: left;\" aria-level=\"1\">Log into your\u00a0<span class=\"notranslate\">Simons Searchlight<\/span>\u00a0account at\u00a0<a href=\"https:\/\/bit.ly\/Simons_Searchlight_Dashboard\">SimonsSearchlight.org<\/a>.<\/li>\n<li style=\"text-align: left;\" aria-level=\"1\">Choose which family member\u2019s CRID you want to add.<\/li>\n<li style=\"text-align: left;\" aria-level=\"1\">Click on the \u201cAccount Settings\u201d tab on the left side of the page.<\/li>\n<li style=\"text-align: left;\" aria-level=\"1\">Scroll down to \u201cOther Settings\u201d and type your CRID in the CRID field. Then click save.<\/li>\n<\/ul>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"clear\"><\/div><\/div>\n<h2>Registration and Account<\/h2>\n<div class=\"simons-accordion-wrap\"><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What do I still need to do to enroll in <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span>?<br \/>\n<a id=\"add-child\" name=\"add child\"><\/a><\/p>\n<\/div><div class=\"acc-bottom\"><p>If you haven\u2019t registered with us, you can create an account at SimonsSearchlight.org by clicking on \u201cJoin Us.\u201d<\/p>\n<p>Once you have registered, log in to <a href=\"https:\/\/research.simonssearchlight.org\/login\">your <\/a><a href=\"https:\/\/research.simonssearchlight.org\/login\">account<\/a>. You\u2019ll see a box on the left side of your dashboard that says, \u201cPriority Task.\u201d This tells you what needs to be done next. If you registered with us before May 2019, you may need to reset your password. Please reach out to the <span class=\"notranslate\">Simons Searchlight<\/span> team at <a href=\"mailto:coordinator@simonssearchlight.org\">coordinator@simonssearchlight.org<\/a> for help with this.<\/p>\n<p><img loading=\"lazy\" decoding=\"async\" class=\"size-full wp-image-5889 aligncenter\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2019\/10\/18065205\/Email1.png\" alt=\"\" width=\"638\" height=\"504\" \/><\/p>\n<p><strong>Need more help with registration? Watch this step by step tutorial video:<\/strong><\/p>\n<iframe loading=\"lazy\" title=\"YouTube video player\" src=\"https:\/\/www.youtube.com\/embed\/mgsBTAloQf4?si=5f-a3FXDO1l85rs8\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>I\u2019m having trouble verifying my email address or adding the code.<\/p>\n<\/div><div class=\"acc-bottom\"><p>During registration, you will be asked to verify your email address by entering in a code sent to your email.<\/p>\n<p>If you don\u2019t receive an email from <span class=\"notranslate\">Simons Searchlight<\/span> asking you to verify your email address via a code or you are unable to log into your account after you verify, please email us at <a href=\"mailto:coordinator@simonssearchlight.org\">coordinator@simonssearchlight.org<\/a>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Do I need to sign a consent form?<\/p>\n<\/div><div class=\"acc-bottom\"><ul>\n<li>A consent form provides you the information you need to make an informed choice about whether or not to participate in a research study. Our ethics board requires that each participant has a signed consent form.<\/li>\n<li>To complete your consent form on your dashboard, click \u201cBegin Task\u201d in the \u201cPriority Task\u201d box.<\/li>\n<li>Information on how to consent for your children is given under \u201cHow do I add children to my account?\u201d<\/li>\n<li>To find your completed consent forms, log in to <a href=\"https:\/\/research.simonssearchlight.org\/login\">your <\/a><a href=\"https:\/\/research.simonssearchlight.org\/login\">account<\/a>. On the right side of your dashboard, you\u2019ll see a box that says \u201cDocuments.\u201d Here you will find consent forms for all family members you registered. If you registered before May 2019, your consent forms will not be available on your dashboard, however you can request them by emailing us at <a href=\"mailto:coordinator@simonssearchlight.org\">coordinator@simonssearchlight.org<\/a>.<\/li>\n<\/ul>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How do I add children to my account?<\/p>\n<\/div><div class=\"acc-bottom\"><ul>\n<li>Log in to <a href=\"https:\/\/research.simonssearchlight.org\/login\">your <\/a><a href=\"https:\/\/research.simonssearchlight.org\/login\">account<\/a>. On the right side of your dashboard, you\u2019ll see a box that says \u201cFamily Invites.\u201d Inside is a smaller button that says \u201cAdd Family Member.\u201d Click on it to register your child.<\/li>\n<li>You can consent for your children by clicking on the \u201cAll Tasks\u201d box on the left side of your dashboard. The box and its contents will expand. Click on the arrow for the participant you want to select, and you\u2019ll be shown their active tasks. This view will also show you tasks that have been completed and the date they were completed.<\/li>\n<\/ul>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Why can\u2019t I add my child\u2019s other parent to my account?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Each independent adult over the age of 18 needs to create an account of their own. To help the other parent start the process, go to the \u201cFamily Invites\u201d box on the right side of your dashboard and click on \u201cInvite Other Parent.\u201d This will take you to a form that asks for the other parent\u2019s name and email address. Once you submit this information, we\u2019ll send an email inviting them to join <span class=\"notranslate\">Simons Searchlight<\/span>. They will be asked to fill out the registration and consent for themselves. They will not need to add any children, though, since you will have already registered the children on your account.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>The site is asking me to add another child, but I don\u2019t have any more children.<\/p>\n<\/div><div class=\"acc-bottom\"><p>Reach out to the <span class=\"notranslate\">Simons Searchlight<\/span> team by emailing <a href=\"mailto:coordinator@simonssearchlight.org\">coordinator@simonssearchlight.org<\/a> and we will remove this task from your dashboard.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What happens if I don\u2019t have time to finish a survey that I am working on?<\/p>\n<\/div><div class=\"acc-bottom\"><p>When you click \u201cnext\u201d to move to the next survey page, your responses are saved. In between survey pages you can take a break and all the responses entered up to, but not including your current page, will be saved. Log back in at any time and pick up where you left off.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What do I do if I don\u2019t remember my password?<\/p>\n<\/div><div class=\"acc-bottom\"><p>On the <a href=\"https:\/\/research.simonssearchlight.org\/login\">login screen<\/a>, click \u201cForgot Password\u201d at the bottom and enter the email address you used to create your account. You will receive an email with instructions to reset your password. If you continue to have issues, contact the <span class=\"notranslate\">Simons Searchlight<\/span> team by emailing <a href=\"mailto:coordinator@simonssearchlight.org\">coordinator@simonssearchlight.org<\/a>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Can you help me understand my genetic lab report?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Genetic lab reports are filled with important information about the genetic results for you or your family member. The <span class=\"notranslate\">Simons Searchlight<\/span> team has created two webinars that walk you through what each piece of your report means and its importance. There are separate webinars based on the type of genetic change:<\/p>\n<ul>\n<li>Copy number variant, such as 16p11.2 deletion or 1q21.1 duplication, or<\/li>\n<li>Change in a specific gene, such as SCN2A or MED13L.<\/li>\n<\/ul>\n<p>You can view these webinars here: <a href=\"https:\/\/www.simonssearchlight.org\/information-resources\/your-genetics-lab-report\/\">https:\/\/www.simonssearchlight.org\/information-resources\/your-genetics-lab-report\/<\/a>.<\/p>\n<p>Contact us if you have questions about your lab report: <a href=\"mailto:coordinator@simonssearchlight.org\">coordinator@simonssearchlight.org<\/a>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Can <span class=\"notranslate\">Simons Searchlight<\/span> provide instructions or assistance if I can&#8217;t access or find my genetic lab report?<\/p>\n<\/div><div class=\"acc-bottom\"><p>If you don\u2019t have a copy of your or your child\u2019s genetic lab report, our <a href=\"https:\/\/www.simonssearchlight.org\/requesting-genetics-lab-reports\/\" target=\"_blank\" rel=\"noopener\">FAQ page<\/a> provides detailed guidance, including instructions and tips, to help you request the original document.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How do I upload my genetic lab report?<\/p>\n<\/div><div class=\"acc-bottom\"><p>After you consent to participate in <span class=\"notranslate\">Simons Searchlight<\/span>, you will be assigned a Lab Report Upload task.<\/p>\n<p><img decoding=\"async\" class=\"wp-image-7712 aligncenter\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2020\/07\/22115911\/lab-upload_1.png\" alt=\"\" \/><\/p>\n<p><img decoding=\"async\" class=\"wp-image-7712 aligncenter\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2020\/07\/22115905\/lab-upload_2-e1595448034965.png\" alt=\"\" \/><\/p>\n<p><img decoding=\"async\" class=\"wp-image-7712 aligncenter\" src=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2020\/07\/22115907\/lab-upload_3.png\" alt=\"\" \/><\/p>\n<p><strong>If you need help finding your genetic lab report, please visit this <a href=\"https:\/\/www.simonssearchlight.org\/requesting-genetics-lab-reports\/\" target=\"_blank\" rel=\"noopener\">FAQ page<\/a> for support.<\/strong><\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>I just uploaded my genetic lab report. What should I do next?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Your genetic lab report will be reviewed by our team to be sure that your family is eligible to participate and to obtain important information from your report that can be used by researchers. It can take from one to three weeks for your report to be reviewed. Once the report is reviewed and approved, we will email you and assign new tasks to your <span class=\"notranslate\">Simons Searchlight<\/span> dashboard, including a task to schedule your medical history phone interview.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Why do you also collect information and samples from parents and siblings?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Sometimes the genetic conditions we study are inherited, meaning that they come from our parents. If either parent also has the genetic variant, it\u2019s possible that other siblings may have it too without showing symptoms. Even if no one else in the family has the genetic variant, data from family members can be useful for comparing people who have genetic conditions with those who are closely related.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What are the benefits of participating in research?<\/p>\n<\/div><div class=\"acc-bottom\"><p>When you participate in <span class=\"notranslate\">Simons Searchlight<\/span> you can:<\/p>\n<ul>\n<li>Learn how you or your child compare to others in your genetic community through summary reports and presentations.<\/li>\n<li>Receive gift cards for completing surveys.<\/li>\n<li>Connect with others who have your diagnosis through our Facebook community and by attending conferences.<\/li>\n<li>Make a difference by contributing information:<br \/>\n&#8211; to help develop care guidelines for patients<br \/>\n&#8211; for research that will help you and future families.<\/li>\n<\/ul>\n<ul>\n<li>Be invited to participate in new studies of the natural history or treatment of your genetic disorder.<\/li>\n<\/ul>\n<p>Review our online <a href=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2020\/02\/13075018\/SL_brochure_PDF_Vertical.pdf\">brochure<\/a> for more information.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"clear\"><\/div><\/div>\n<h2>Other Languages<\/h2>\n<div class=\"simons-accordion-wrap\"><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How do I participate as a non-English speaker?<\/p>\n<\/div><div class=\"acc-bottom\"><p>If you are not comfortable participating in English and you are fluent in another language on our list, we will ask you to complete the following steps. Not all surveys are available in each language, so your list of things to do may be different from someone who participates in English. Please review our <a href=\"https:\/\/www.simonssearchlight.org\/participating-in-other-languages\/\" target=\"_blank\" rel=\"noopener\">webpage<\/a> for more details.<\/p>\n<ol>\n<li>Start by clicking \u201cJoin Us Today\u201d to register in your preferred language. The consent form has been officially translated by a medical translator.<\/li>\n<li>Upload your genetic lab report that provides the detail on your genetic disorder.<\/li>\n<li>Speak to a <span class=\"notranslate\">Simons Searchlight<\/span> genetic counselor on the phone about your or your child\u2019s medical history. A medical translator will be on the phone to help translate information accurately.<\/li>\n<li>Complete any additional surveys that appear on your dashboard.<\/li>\n<\/ol>\n<p>Currently, our program does not have a mechanism to secure phlebotomy services outside of the U.S., therefore collection is currently limited to participants within the U.S. However, we are actively exploring solutions to make participation more accessible globally.<\/p>\n<p>In the meantime, we review international blood donations on a case-by-case basis, and we encourage any non-U.S. families interested in participating to reach out to our team directly to explore potential options. Email us at <a href=\"mailto:Coordinator@SimonsSearchlight.org\">Coordinator@SimonsSearchlight.org<\/a>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"clear\"><\/div><\/div>\n<h2>Privacy<\/h2>\n<div class=\"simons-accordion-wrap\"><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How does <span class=\"notranslate\">Simons Searchlight<\/span> protect my data?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Here are some of the ways that we keep your personal information private:<\/p>\n<ul>\n<li>Before we share your data with scientists, your personal identifying information, like name, address, and date of birth, are removed and replaced with a study code to make sure no one can readily identify you.<\/li>\n<li>All your research data and records are stored electronically in a secure, encrypted, password-protected database.<\/li>\n<li>We will not release research data about you or your child to others, unless required by law.<\/li>\n<li>We will never publish anything about the study on any forum that could identify you without your express permission.<\/li>\n<li>Our third-party service providers and consultants are legally required to keep all your research data private. While we cannot guarantee total privacy, we make every effort to maintain your privacy.<\/li>\n<\/ul>\n<p>You can read more about <span class=\"notranslate\">Simons Searchlight<\/span>\u2019s privacy policy on our website: <a href=\"https:\/\/www.simonssearchlight.org\/privacy-policy\/\" target=\"_blank\" rel=\"noopener\">https:\/\/www.simonssearchlight.org\/privacy-policy\/<\/a>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What information that I share with <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> will my family members be able to see?<\/p>\n<\/div><div class=\"acc-bottom\"><p>All independent adults will have their own separate account, including biological relatives. Information is not shared across accounts. If you are the first parent to create an account and you invite the second parent, you will only be able to see his or her name on your <span class=\"notranslate\">Simons Searchlight<\/span> dashboard but no tasks or whether he or she has accepted the invitation to join. If you are the invited parent, you won\u2019t see the tasks of the first parent or any of the children added by the first parent, but you may see their names on your dashboard.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How do you protect my information if I&#8217;m part of a smaller genetic community?<\/p>\n<\/div><div class=\"acc-bottom\"><p>We take your privacy very seriously, especially if you&#8217;re part of a smaller genetic community. Since there may be fewer people \u2014 sometimes less than 10 \u2014 with the same genetic changes, there could be a slightly higher risk of someone identifying you, even after we remove your personal details.<\/p>\n<p>To reduce this risk, we use strong security measures and share only de-identified data. Sharing this data allows us to release information for smaller groups, helping raise awareness, encourage more research, and create tools that can improve understanding and treatment of rare conditions.<\/p>\n<p>We do everything we can to protect your information while supporting research that benefits you and your community.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How is my data being used by researchers?<\/p>\n<\/div><div class=\"acc-bottom\"><ul>\n<li>Researchers usually combine the data in our registry with data in their research lab or study. They use this information to increase scientific knowledge of a condition.<\/li>\n<li>Different researchers look at the data in our registry in different ways, and we encourage all types of researchers to access the\u00a0<span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span> <\/span> <\/span> <\/span> <\/span> \u00a0<\/span>data.<\/li>\n<li>The\u00a0<span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span> <\/span> <\/span> <\/span> <\/span> \u00a0<\/span>team continually reevaluates the surveys we collect in our registry. If there is something you recommend adding to our survey list, please contact us by emailing\u00a0<a href=\"mailto:coordinator@simonssearchlight.org\">coordinator@simonssearchlight.org<\/a>.<\/li>\n<\/ul>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How many times has my data been accessed by researchers?<\/p>\n<\/div><div class=\"acc-bottom\"><ul>\n<li>That depends. Different researchers study different genetic disorders, so how many times your data has been accessed will vary by genetic condition. New researchers access our data frequently, so usage changes over time. As a reminder, all of your identifying information is removed from data and samples before they are used for research. Qualified researchers with approved projects always have access to the data at no cost.<\/li>\n<li>Our goal is to provide data and samples to researchers. If you are in contact with a researcher who might be interested in our resources, please reach out to the <span class=\"notranslate\">Simons Searchlight<\/span> team by emailing <a href=\"mailto:coordinator@simonssearchlight.org\">coordinator@simonssearchlight.org<\/a>.<\/li>\n<li>Your data will be released to approved researchers once you have consented, submitted your genetic lab report, and participated in at least one survey. In order to protect your privacy, <span class=\"notranslate\">Simons Searchlight<\/span> requires that there are at least five participants per genetic condition that have completed these tasks before releasing the data to a qualified researcher.<\/li>\n<\/ul>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How are my family\u2019s blood samples used by researchers?<\/p>\n<\/div><div class=\"acc-bottom\"><ul>\n<li>Researchers use blood samples for a variety of reasons, from gene sequencing to stem cell creation. Providing a blood sample for research is optional, and you may opt in or opt out on your or your child\u2019s consent form.<\/li>\n<li>It is important for researchers to have access to data about you along with your blood sample. Keeping up to date with requested tasks on your dashboard helps to further research.<\/li>\n<\/ul>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Does <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> sell my data and samples?<\/p>\n<\/div><div class=\"acc-bottom\"><p>No. Qualified researchers interested in accessing <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> data and samples can <a href=\"https:\/\/base.sfari.org\/\">complete an application on SFARI Base<\/a>. After being reviewed and approved, <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> data will be shared. When samples are requested, researchers pay only for the cost of preparing and shipping the samples.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How does <span class=\"notranslate\">Simons Searchlight<\/span> handle General Data Protection Regulation (GDPR)-related requests for data?<\/p>\n<\/div><div class=\"acc-bottom\"><p><span class=\"notranslate\">Simons Searchlight<\/span> has reviewed the GDPR. According to the \u2018participant\u2019s right to access\u2019 provision, personal identifiable data will be shared back to the participant in electronic format if requested.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"clear\"><\/div><\/div>\n<h2>Differences between <span class=\"notranslate\">SPARK<\/span> and <span class=\"notranslate\">Simons Searchlight<\/span><\/h2>\n<div class=\"simons-accordion-wrap\"><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How is <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">SPARK<\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> different than <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> ?<\/p>\n<\/div><div class=\"acc-bottom\"><p><span class=\"notranslate\">SPARK<\/span> is a United States-based autism research initiative that aims to recruit, engage, and retain a large community of people who have autism and their families. It is only for families living in the United States. <span class=\"notranslate\">Simons Searchlight<\/span> is an international study of people who have specific genetic disorders, who may or may not have autism, and their families. Currently, <span class=\"notranslate\">Simons Searchlight<\/span> collects more detailed medical information about people who have genetic conditions.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Can I be enrolled in both <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">SPARK<\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> and <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> ?<\/p>\n<\/div><div class=\"acc-bottom\"><p>If you are participating in <span class=\"notranslate\">SPARK<\/span> and already know that you have a genetic change that is on our list, we encourage you to also register for <span class=\"notranslate\">Simons Searchlight<\/span>. If you already participate in <span class=\"notranslate\">Simons Searchlight<\/span>, you do not need to sign up for <span class=\"notranslate\">SPARK<\/span>. Many surveys are similar between <span class=\"notranslate\">SPARK<\/span> and <span class=\"notranslate\">Simons Searchlight<\/span>. We hope to reduce the number of surveys that are repeated for anyone who is participating in both studies.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>I received a genetic result from <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">SPARK<\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span>; can I enroll in <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span>?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Yes, most of the genetic results from <span class=\"notranslate\">SPARK<\/span> are related to autism, and people with those gene changes are eligible to participate in <span class=\"notranslate\">Simons Searchlight<\/span>. If you receive a result from <span class=\"notranslate\">SPARK<\/span> that is related to your or your child\u2019s autism diagnosis, you will be invited to join <span class=\"notranslate\">Simons Searchlight<\/span>.<\/p>\n<p><span class=\"notranslate\">SPARK<\/span> returns some genetic results that are disease-causing but not linked to autism. These results are called incidental findings. Individuals with these results are not eligible for <span class=\"notranslate\">Simons Searchlight<\/span>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>If I filled out surveys in <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">SPARK<\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span>, do I need to fill out similar surveys in <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span><\/span><\/span><\/span><\/span><\/span><\/span><\/span>?<br \/>\n<a id=\"samples\" name=\"samples\"><\/a><\/p>\n<\/div><div class=\"acc-bottom\"><p>Yes, when a <span class=\"notranslate\">SPARK<\/span> participant enrolls in <span class=\"notranslate\">Simons Searchlight<\/span>, we recommend that they fill out all of the assigned surveys on their dashboard. Symptoms and features can change over time, so we will also follow up with you yearly for updates.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Why aren\u2019t all <span class=\"notranslate\">SPARK<\/span> autism-related genetic conditions studied in <span class=\"notranslate\">Simons Searchlight<\/span>?<\/p>\n<\/div><div class=\"acc-bottom\"><p>We know that one of the major challenges for rare disease groups is to increase the number of participants in research. We also know that families have many demands on their time. When a genetic condition already has a well-established patient registry or natural history study, we believe it is important to avoid dividing the efforts of participants. As a result, the following list of genetic conditions were removed from <span class=\"notranslate\">Simons Searchlight<\/span>\u2019s gene list in September 2020:<\/p>\n<table style=\"width: 100%;\">\n<tbody>\n<tr>\n<td style=\"width: 70%;\"><strong>3q29 deletion<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>LZTR1<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>3q29 duplication<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>MAGEL2<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>5p deletion<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>MAP2K1<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>7q11.23 deletion<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>MAP2K2<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>7q11.23 deletion DISTAL<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>MECP2<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>8p23.1 deletion<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>NF1<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>8p23.1 duplication<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>NRAS<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>15q11.2-q13.1 deletion<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>PCDH19<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>15q11.2-q13.1 duplication<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>POGZ<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>17p11.2 deletion<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>PPP1CB<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>17p11.2 duplication<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>PTEN<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>17q11.2 deletion<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>PTPN11<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>17q11.2 duplication<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>PURA<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>22q11.2 deletion<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>RAF1<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>22q11.2 duplication<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>RAI1<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>22q13.3 deletion<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>RIT1<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>BRAF<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>SHANK3<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>CDKL5<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>SHOC2<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>CHD7<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>SOS1<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>FMR1<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>SOS2<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>FOXG1<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>TBCK<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>HRAS<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>TCF4<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>KAT6A<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>TSC1<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>KCNQ2<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>TSC2<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>KCNQ3<\/strong><\/td>\n<td style=\"width: 30%;\"><strong>UBE3A<\/strong><\/td>\n<\/tr>\n<tr>\n<td style=\"width: 70%;\"><strong>KRAS<\/strong><\/td>\n<td style=\"width: 30%;\"><\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"clear\"><\/div><\/div>\n<h2>Blood &amp; Saliva Collection<\/h2>\n<div class=\"simons-accordion-wrap\"><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What are IBX, RUCDR, and Rutgers?<\/p>\n<\/div><div class=\"acc-bottom\"><p>You may have seen one of these names on your blood draw kit, or in your paperwork. IBX is the name of our biorepository that is based at Rutgers University in New Jersey. IBX was formerly known as RUCDR, which stands for Rutgers University Cell and DNA Repository. We work directly with this repository to process your blood samples.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Why did I receive a blood draw kit or saliva kit?<\/p>\n<\/div><div class=\"acc-bottom\"><p>You said \u201cYES\u201d to the optional biospecimen collection on your <span class=\"notranslate\">Simons Searchlight<\/span> consent form. All of your identifying information is removed from samples that are sent to researchers.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What is the difference between providing blood and providing saliva? Which one is better?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Most of the time, blood is more useful for scientists. This is because within your blood, there are many cell types that can be used and turned into other cell types. For example, a blood sample from a participant can be turned into induced pluripotent stem cells (iPSCs). iPSCs are a powerful resource for researchers. Saliva is still useful for research, but it is more limited.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How do I complete my blood draw kit?<\/p>\n<\/div><div class=\"acc-bottom\"><p>When we mailed you the kit, you were also sent an email with instructions on how to find your local Quest Diagnostics to schedule an appointment. The package you were sent should include an additional instruction sheet. Once you find your local Quest Diagnostics, you can schedule your appointment and take your kits to your visit. A phlebotomist at the Quest Diagnostics will draw your blood, package the kit, and ship your samples for you. If you have any issues with this process or need the instruction email resent, feel free to reach out to the coordinators by emailing <a href=\"mailto:coordinator@simonssearchlight.org\">coordinator@simonssearchlight.org<\/a>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Are there other ways to complete my blood draw?<\/p>\n<\/div><div class=\"acc-bottom\"><p>We partner with Quest Diagnostics, a United States-based network of laboratories, for collecting blood samples for <span class=\"notranslate\">Simons Searchlight<\/span>. If you have a medical provider, such as a primary care doctor, who is willing to draw your blood for <span class=\"notranslate\">Simons Searchlight<\/span>, this is also an option for participants in the United States. Your doctor needs to be willing to do this without a prescription and without payment because the rules are strict regarding research blood draw collection. Before we mail you a kit, we ask that you confirm in advance with your provider that they are willing to collect your blood for you. We provide instructions and the materials to ship the samples to our repository regardless of where they are drawn. If you plan to have your medical provider complete the blood draw for you, <span style=\"font-weight: 400;\">you can <\/span><a href=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2021\/11\/02065434\/Provider-Blood-Draw-Letter.pdf\"><span style=\"font-weight: 400;\">download this form <\/span><\/a><span style=\"font-weight: 400;\">and share it with them, which explains what Simons Searchlight is and the purpose of the draw<\/span>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>If I\u2019m outside the United States, can I provide a blood sample?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Currently, our program does not have a mechanism to secure phlebotomy services outside of the U.S., therefore collection is currently limited to participants within the U.S. However, we are actively exploring solutions to make participation more accessible globally.<\/p>\n<p>In the meantime, we review international blood donations on a case-by-case basis, and we encourage any non-U.S. families interested in participating to reach out to our team directly to explore potential options. Email us at <a href=\"mailto:Coordinator@SimonsSearchlight.org\">Coordinator@SimonsSearchlight.org<\/a>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Are there any costs to complete my sample collection?<\/p>\n<\/div><div class=\"acc-bottom\"><p>There are no costs associated with your sample collection. We pay for the collection at Quest Diagnostics and for shipping your kits to you and to our lab. If you are asked to cover any costs, please reach out to us before paying them.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Will I receive any results from my sample?<\/p>\n<\/div><div class=\"acc-bottom\"><p>No, you will not receive any results from your blood sample. All of your identifying information is removed from samples before they are used for research.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What if my child or I cannot or do not want to complete sample collection?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Sample collection is an optional part of our research, so you don\u2019t have to do it. You can also schedule your blood draw at a later time \u2014 just let us know.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>How does blood donation or collection work?<\/p>\n<\/div><div class=\"acc-bottom\"><p><span class=\"notranslate\">Simons Searchlight<\/span> collects blood from families that have consented to provide samples as a part of their participation in the study. The blood samples collected for <span class=\"notranslate\">Simons Searchlight<\/span> are de-identified and stored at a research repository. Qualified researchers can request to access these blood samples to better understand the genetic variants in <span class=\"notranslate\">Simons Searchlight<\/span>.<\/p>\n<p><a href=\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2024\/07\/17132032\/Blood-draw-sample-instructions-graphic_LinkedIn-7.png\" target=\"_blank\" rel=\"noopener\">Learn more in this blood sample collection graphic.<\/a><\/p>\n<p>&nbsp;<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"clear\"><\/div><\/div>\n<h2>Genetic Testing<\/h2>\n<div class=\"simons-accordion-wrap\"><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Why did I receive a genetic testing kit from GeneDx?<\/p>\n<\/div><div class=\"acc-bottom\"><p>Genetic testing is used to identify additional family members that have the gene change, for example 16p11.2 or SCN2A. Our genetic counselors determine who is eligible for genetic testing after reviewing your family\u2019s records. We will only send you genetic testing kits for family members who are eligible for additional testing.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Who is eligible for genetic testing through <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> ?<\/p>\n<\/div><div class=\"acc-bottom\"><p>If you are eligible for genetic testing, we will reach out to you to let you know. Our team of genetic counselors reviews your lab reports to determine eligibility for genetic testing. All of the lab reports that are submitted will be reviewed. If you are considered eligible for genetic testing, you will need to create a <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> account and sign a consent form.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>When will I receive a result for my genetic testing?<\/p>\n<\/div><div class=\"acc-bottom\"><p>The lab usually takes about four weeks to send us test results. Once we receive a result, a genetic counselor from our team will email or call you with this information and provide you with a copy of the lab report.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What if I don\u2019t want to complete the genetic testing kit?<\/p>\n<\/div><div class=\"acc-bottom\"><p>It&#8217;s optional \u2014 so you don&#8217;t have to! We offer genetic testing to eligible\u00a0family members as a part of participation in <span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\"><span class=\"notranslate\">Simons Searchlight<\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> <\/span> . If you\u2019d like to discuss the benefits and limitations of genetic testing for other family members, please reach out to one of our genetic counselors at <a href=\"mailto:coordinator@simonssearchlight.org\">coordinator@simonssearchlight.org<\/a>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Are there any costs to complete genetic testing?<\/p>\n<\/div><div class=\"acc-bottom\"><p>There are no costs associated with your sample collection. We pay to ship the kit to you and then to our lab, GeneDx. We also pay for the cost of the testing at our lab. If you are asked to cover any costs, please reach out to us before paying them.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What is the difference between a genetic testing kit and the RUCDR sample collection kit?<\/p>\n<\/div><div class=\"acc-bottom\"><p>A genetic testing kit will have a returnable result. We contact you once your results are ready and answer any questions you may have at that time. For the RUCDR kits, all of your identifying information is removed from samples before they are used for research. There will be no returnable results.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>My genetic testing identified a variant of uncertain significance. Should I still sign up for <span class=\"notranslate\">Simons Searchlight<\/span>?<\/p>\n<\/div><div class=\"acc-bottom\"><p><span style=\"font-weight: 400;\">Yes! Variants of uncertain significance, also called VUS, are genetic variants that we don\u2019t fully understand when genetic testing is completed.<\/span><\/p>\n<p>Genetic testing laboratories classify the significance of genetic variants based on the evidence in the literature, genomic databases,\u00a0modeling tools available at that time,\u00a0and inheritance information (if a genetic variant is passed down from a parent (inherited) or brand new, only in a child (de novo)).\u00a0Certain types of genetic tests can be completed with a child as well as their biological parents submitting samples to provide\u00a0information about\u00a0inheritance. Genetic testing completed as trio, includes a child and each biological parent.\u00a0Based\u00a0on all of these pieces of evidence\u00a0a\u00a0genetic variant can be classified as a variant of uncertain significance when there is not enough evidence to classify the genetic variant as benign (harmless) or pathogenic (harmful). Variants of uncertain significance may be reclassified as benign or pathogenic over time. This happens as more evidence accumulates and additional research is completed, including initiatives such as Simons Searchlight.<\/p>\n<p><span style=\"font-weight: 400;\">As part of participation in <span class=\"notranslate\">Simons Searchlight<\/span>, all variants of uncertain significance are reviewed by our genetic counseling team every year to capture new research or knowledge that may change the classification. We also offer complimentary parental testing to help participants and researchers to better understand the possible significance of uncertain variants. Resolving the classification of variants of uncertain significance is meaningful to families, researchers, and <span class=\"notranslate\">Simons Searchlight<\/span>. We keep a close eye on variants of uncertain significance and will update you if there is a reclassification.<\/span><\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"clear\"><\/div><\/div>\n<h2>Medical History<\/h2>\n<div class=\"simons-accordion-wrap\"><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What is the Medical History in the <span class=\"notranslate\">Simons Searchlight<\/span> research study?<\/p>\n<\/div><div class=\"acc-bottom\"><p><span style=\"font-weight: 400;\">A person\u2019s medical history contains information that is important for understanding the natural history of a rare disease. This is why we make it easy for all families to report medical history information through a hybrid of online and telephone surveys.<\/span><\/p>\n<ul>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">You will receive a reminder by email to report your or your family member\u2019s medical history. Log in to your Searchlight account and select the Medical History task on your dashboard.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">In 2022, your first medical history will take place by phone interview, and you will schedule an appointment with a certified genetic counselor using an online calendar.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">In 2023, your first medical history will begin with an online screening survey, followed by an optional phone interview with a genetic counselor.<\/span><\/li>\n<li style=\"font-weight: 400;\" aria-level=\"1\"><span style=\"font-weight: 400;\">Follow ups will be done yearly around the person\u2019s birthday\u2014watch for an email reminder to complete the Yearly Medical History Update online.<\/span><\/li>\n<\/ul>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>When do I complete an MHI?<\/p>\n<\/div><div class=\"acc-bottom\"><p>The MHI scheduling task is assigned as soon as your lab report is approved (about one to two weeks after your lab report is uploaded). Within this task, you will be able to select the day and time you would like to have the call.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>For the MHI call, do I call the genetic counselors, or do they call me?<\/p>\n<\/div><div class=\"acc-bottom\"><p>If you live in the United States, one of our genetic counselors will call you at the phone number listed in your <span class=\"notranslate\">Simons Searchlight<\/span> account. If you live outside the United States, check your email for a Zoom link to join an audio call.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>When I schedule my MHI call, how do you determine the right time zone?<\/p>\n<\/div><div class=\"acc-bottom\"><p>The MHI scheduling task will automatically adjust the displayed time slots to match the local time zone of your internet browser.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What do I do if I need to reschedule my MHI call?<\/p>\n<\/div><div class=\"acc-bottom\"><p>If you need to reschedule your MHI call, log into your dashboard and click \u201creschedule\u201d under the completed MHI schedule task.<\/p>\n<p>If you have any questions about signing up for <span class=\"notranslate\">Simons Searchlight<\/span> research, please review our registration webinar below or email the study team at <a href=\"mailto:coordinator@simonssearchlight.org\">coordinator@simonssearchlight.org<\/a>.<\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>When do I share my Medical History?<\/p>\n<\/div><div class=\"acc-bottom\"><p><span style=\"font-weight: 400;\">Your first Baseline Medical History task is assigned as soon as your lab report is approved. This is usually about one to two weeks after your lab report was uploaded. In 2022, you will complete a scheduling task first, to select the day and time you would like to have the call. In 2023, we added a link to the Medical History survey to complete on your account dashboard.<\/span><\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>What is the difference between \u201cBaseline\u201d Medical History and Yearly Medical History Update?<\/p>\n<\/div><div class=\"acc-bottom\"><p><span style=\"font-weight: 400;\">Your first Medical History, also called your \u201cBaseline\u201d, will ask questions about pregnancy and birth and all medical and developmental issues for the person with the genetic condition. After that, the Yearly Medical History Updates will ask for any new diagnoses and treatments, and how issues have improved or progressed. We suggest that you have medical records on hand to help with topics, such as medication, surgery, and hospitalizations. In order to understand how you or your family member changes over time, it\u2019s important to complete these yearly surveys.<\/span><\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>Why is it important to share my medical history with <span class=\"notranslate\">Simons Searchlight<\/span>?<\/p>\n<\/div><div class=\"acc-bottom\"><p>You and your families play critical roles in advancing rare disease research. Katina Calakos, a neuroscientist from the <span class=\"notranslate\">Simons Searchlight<\/span> team, discusses this further in the short video below.<\/p>\n<p>Discover the significance of sharing your medical information and completing the Annual Medical History Survey (AMHS) conveniently from home. Explore the impact of your contribution, redeem rewards for your participation, and stay connected with our team for ongoing support and answers to your questions. Your involvement is crucial in propelling forward medical research and elevating clinical care on a global scale. Watch the video to learn more.<\/p>\n<iframe loading=\"lazy\" title=\"YouTube video player\" src=\"https:\/\/www.youtube.com\/embed\/KUklTOkLg-M?si=eeP6kXzXSnSRND9o&amp;controls=0\" width=\"560\" height=\"315\" frameborder=\"0\" allowfullscreen=\"allowfullscreen\"><\/iframe><\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"acc-item\"><div class=\"acc-top\"><span class=\"acc-icon\">+<\/span><p>My child\/dependent is older and has an extensive medical history. I don\u2019t have all of their medical records available and am feeling overwhelmed about having to answer questions. What should I do?<\/p>\n<\/div><div class=\"acc-bottom\"><p><span style=\"font-weight: 400;\">No problem at all! We know many participants complete their initial medical history call with decades of medical information. For your first Baseline Medical History, our genetic counselors will follow up with you with a phone call to walk through it. They are highly experienced in the medical histories of individuals with neurodevelopmental disorders and will be able to walk you through your child\/dependent\u2019s medical history, even if not all of the details can be recalled.<\/span><\/p>\n<p><span style=\"font-weight: 400;\">After that, in your Yearly Medical History Update survey, you will not need to remember and report all of that past information again.<\/span><\/p>\n<\/div><div class=\"clear\"><\/div><\/div><div class=\"clear\"><\/div><\/div>\n<p style=\"text-align: center;\">\n","protected":false},"excerpt":{"rendered":"<p>About Simons Searchlight Registration and Account Other Languages Privacy Differences between SPARK and Simons Searchlight Blood &amp; Saliva Collection Genetic Testing Medical History<\/p>\n","protected":false},"author":4,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"page-faq.php","meta":{"_acf_changed":false,"_relevanssi_hide_post":"","_relevanssi_hide_content":"","_relevanssi_pin_for_all":"","_relevanssi_pin_keywords":"","_relevanssi_unpin_keywords":"","_relevanssi_related_keywords":"","_relevanssi_related_include_ids":"","_relevanssi_related_exclude_ids":"","_relevanssi_related_no_append":"","_relevanssi_related_not_related":"","_relevanssi_related_posts":"","_relevanssi_noindex_reason":"","footnotes":""},"acf":[],"_links":{"self":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/762"}],"collection":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages"}],"about":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/types\/page"}],"author":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/users\/4"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=762"}],"version-history":[{"count":115,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/762\/revisions"}],"predecessor-version":[{"id":60182,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/762\/revisions\/60182"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=762"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}