For usage guidelines, please review our provided materials.* We’re here to support you, so don’t hesitate to contact us with questions or if you need other resources.<\/p>\n
- \n
- *Guidelines: As a research study, Simons Searchlight<\/span> materials require review by our Institutional Review Board (IRB) and staff. Combine the approved text with our images and videos. Please note, that additional monetary incentives for participation are not allowed, except for pre-approved gift cards approved by our IRB. If you have new ideas for recruitment or questions about using our materials, contact us.<\/li>\n<\/ul>\n
Stay Informed with Monthly Updates: Receive our monthly updates on data, new social media resources, and progress. Fill out this short Google form<\/a> to subscribe and share valuable updates with your communities.<\/p>\n
![\"\"](\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2023\/10\/04104605\/DESIGN_ELEMENTS_dashes-dots2-e1696445231760-1024x143.png\")
<\/p>\n\n\n\nCommunity Outreach Toolkit<\/span><\/h2>\n
Resources<\/strong><\/h2>\n
Guidelines for using these items:<\/span> Please use the “Sample Explanation” text provided below in combination with the images and videos. <\/span><\/p>\n
+<\/span>Simons Searchlight<\/span> Description<\/p>\n<\/div>
Overview of Simons Searchlight<\/strong><\/p>\n
Simons Searchlight<\/span> is an international online research program registry that works with families and researchers around the world to help speed up research on rare genetic neurodevelopmental disorders. Simons Searchlight<\/span> is funded by the Simons Foundation<\/span> Autism Research Initiative (SFARI) which aims to better understand rare genetic neurodevelopmental conditions, specifically those associated with autism spectrum disorder (ASD).<\/p>\n
By collecting detailed family, medical, developmental and behavioral information through online surveys and phone interviews as well as blood samples, Simons Searchlight<\/span> takes a deep dive into these disorders. They share the information and blood samples with leading geneticists and scientists around the world to use to improve the lives of people living with rare genetic neurodevelopmental disorders. Participation is open worldwide to people who speak English, Dutch, French, and Spanish, and more languages are coming soon.<\/p>\n
People of any age with a [GENE\/Copy Number Variant] diagnosis and their family members can sign up. Participants may have a diagnosis of autism, epilepsy, language impairments, or intellectual disability, but none of these is a requirement to join. Register today.<\/p>\n
If you have any questions, please contact their Study Coordinators at coordinator@simonssearchlight.org.<\/p>\n<\/div>
<\/div><\/div>+<\/span>Simons Searchlight<\/span> Images<\/b><\/p>\n<\/div>
- \n
- Simons Searchlight<\/span> logo<\/span><\/a><\/li>\n
- Simons Searchlight generic graphic with abstract art and logo<\/a><\/li>\n
- What are the goals of Simons Searchlight image<\/span><\/a><\/li>\n
- How to participate in Simons Searchlight – registration steps image<\/a><\/li>\n<\/ul>\n<\/div>
<\/div><\/div>+<\/span>Shine Your Searchlight \u2728 Outreach Materials<\/span><\/b><\/p>\n<\/div>
With the help of our Community Advisory Committee, we developed a series of infographics that are meant to support our patient advocacy communities with recruitment and engagement efforts in Simons Searchlight<\/span>.<\/p>\n
View these slides<\/a> and download them for your own outreach use.<\/p>\n<\/div>
<\/div><\/div>+<\/span>Explanation Graphics\/Articles\/Brochures<\/b><\/p>\n<\/div>
- \n
- Empowering Families to Take Action (article<\/a>)<\/li>\n
- How to Read the Vineland Adaptive Behavior Scales Growth Chart (article<\/a>)<\/li>\n
- A Family Guide: Navigating Life After a Rare Genetic Diagnosis (link<\/a>)<\/li>\n
- Research participation process (Participation in English<\/a>)<\/li>\n
- Research participation process (Participation in other languages<\/a>)<\/li>\n
- Outline of how Simons Searchlight<\/span> is funded and connection to other programs (link<\/a>)<\/li>\n
- Simons Searchlight<\/span>\u2019s Top 10 Accomplishments (article<\/a>)<\/li>\n
- Simons Searchlight<\/span> brochure (link<\/a>) – revised 2022<\/li>\n
- How does blood donation or collection work? (link<\/a>)<\/li>\n
- How to add CRID to participant dashboard (link<\/a>)<\/li>\n<\/ul>\n<\/div>
<\/div><\/div>+<\/span>Explanation Videos<\/b><\/p>\n<\/div>
- \n
- What is Simons Searchlight? Explained by Dr. Wendy Chung (video<\/a>)<\/li>\n
- Simons Searchlight Explained – An Animated Research Journey (video<\/a>)<\/li>\n
- How to register in Simons Searchlight – step by step tutorial (video<\/a>)<\/li>\n
- Journey of Hope: Families Share Their Stories with Simons Searchlight (FB video<\/a>, YouTube video<\/a>)<\/li>\n
- How Simons Searchlight and Patient Advocacy Groups Accelerate Scientific Breakthroughs Together (FB video<\/a>, Youtube video<\/a>)<\/li>\n
- How to Claim Your Simons Searchlight Rewards (for completing surveys) (YouTube video<\/a>)<\/li>\n
- Principal Investigator Wendy Chung\u2019s description of Simons Searchlight <\/span>(<\/span>FB video<\/span><\/a>, <\/span>YouTube video<\/span><\/a>)<\/span><\/li>\n
- Understanding the Importance of Sharing Your Annual Medical History (FB video<\/a>, YouTube video<\/a>)<\/li>\n
- Simons Searchlight Genetic Counselors Supporting Our Participants (video<\/a>)<\/li>\n
- How to claim gift cards (we provide incentives for completing the medical history phone call and surveys) (<\/span>YouTube video<\/span><\/a>)<\/span><\/li>\n
- The importance of giving blood (YouTube video<\/a>)<\/li>\n
- How to provide an electronic signature for Simons Searchlight<\/span> to request your genetics lab report (<\/span>FB video<\/span><\/a>, <\/span>YouTube video<\/span><\/a>)<\/span><\/li>\n
- How is information shared back to the community (<\/span>FB video<\/span><\/a>, <\/span>YouTube video<\/span><\/a>)<\/span><\/li>\n
- How long does it take to register in Simons Searchlight<\/span>(<\/span>FB video<\/span><\/a>, <\/span>YouTube video<\/span><\/a>)<\/span><\/li>\n
- How is my data privacy protected (FB video<\/a>, YouTube video<\/a>)<\/li>\n
- What is Simons Searchlight (in Spanish)? (YouTube video<\/a>)<\/li>\n
- Simons Searchlight values collaborations to advance research (YouTube video<\/a>)<\/li>\n
- Researchers using Simons Searchlight data (YouTube video<\/a>)<\/li>\n<\/ul>\n<\/div>
<\/div><\/div>+<\/span>Resources to Share with Researchers – How to Use SFARI Base to Access Simons Searchlight<\/span> Data<\/p>\n<\/div>
These slides outline how researchers can access Simons Searchlight<\/span> data through SFARI Base. It covers:<\/p>\n
- \n
- Required materials to create an account<\/li>\n
- Available research resources<\/li>\n
- Key information for accessing data<\/li>\n<\/ul>\n
Please share these slides<\/a> with interested researchers and encourage them to register with SFARI Base to access our research resources.<\/p>\n<\/div>
<\/div><\/div>+<\/span>Other Social Media Items<\/p>\n<\/div>
- \n
- 10-year anniversary video, which won a digital health award! (<\/span>link<\/span><\/a>)<\/span><\/li>\n
- Importance of uploading a genetics lab report (<\/span>link<\/span><\/a>)<\/span><\/li>\n
- Likelihood of an ASD diagnosis for participants (<\/span>link<\/span><\/a>)<\/span><\/li>\n
- How common is epilepsy in participants (<\/span>link<\/span>)<\/span><\/li>\n
- Simons Searchlight<\/span> research publication awareness (<\/span>link<\/span><\/a>)<\/span><\/li>\n
- Simons Searchlight<\/span> researchers accessing data (<\/span>link<\/span><\/a>)<\/span><\/li>\n
- When participants that are dependents turn 18 years old (<\/span>link<\/span><\/a>)<\/span><\/li>\n
- Guardianship (link<\/a>)<\/li>\n<\/ul>\n<\/div>
<\/div><\/div><\/div><\/div>\nFrequently Asked Questions<\/strong><\/h2>\n
+<\/span>How does Simons Searchlight<\/span> support patient advocacy groups?<\/p>\n<\/div>
We have an entire “Partnerships” website<\/a> devoted to this exact topic! You can learn more about how Simons Searchlight and patient advocacy communities work together to support each other.<\/p>\n
Overview: Patient advocacy groups have different levels of involvement with Simons Searchlight and we value our partnership with each of them<\/span>.<\/p>\n
- \n
- Some groups engage with us online through email and social media.<\/li>\n
- Others organize conferences centered on bringing families and researchers together, and invite us to present on the research registry concept, collect participant blood, and present on updated registry results.<\/li>\n
- Simons Searchlight<\/span> can help provide some funding to in-person conferences that conduct research on participants at the event.<\/li>\n<\/ul>\n
Patient advocacy groups are able to move research forward on their genetic condition by connecting with researchers. These researchers can request access to de-identified Simons Searchlight<\/span> data at no cost through SFARI Base<\/a>, our secure online repository.<\/p>\n<\/div>
<\/div><\/div>+<\/span>How can patient advocacy groups promote Simons Searchlight<\/span>?<\/p>\n<\/div>
- Importance of uploading a genetics lab report (<\/span>link<\/span><\/a>)<\/span><\/li>\n
- 10-year anniversary video, which won a digital health award! (<\/span>link<\/span><\/a>)<\/span><\/li>\n
- Simons Searchlight Explained – An Animated Research Journey (video<\/a>)<\/li>\n
- How to Read the Vineland Adaptive Behavior Scales Growth Chart (article<\/a>)<\/li>\n
- Simons Searchlight generic graphic with abstract art and logo<\/a><\/li>\n
- Simons Searchlight<\/span> logo<\/span><\/a><\/li>\n
![How to participate in Simons Searchlight – registration steps image<\/a><\/li>\n<\/ul>\n<\/div><\/div><\/div>+<\/span>Shine Your Searchlight \u2728 Outreach Materials<\/span><\/b><\/p>\n<\/div>With the help of our Community Advisory Committee, we developed a series of infographics that are meant to support our patient advocacy communities with recruitment and engagement efforts in Simons Searchlight<\/span>.<\/p>\nView these slides<\/a> and download them for your own outreach use.<\/p>\n<\/div><\/div><\/div>+<\/span>Explanation Graphics\/Articles\/Brochures<\/b><\/p>\n<\/div>\nEmpowering Families to Take Action (article<\/a>)<\/li>\nHow to Read the Vineland Adaptive Behavior Scales Growth Chart (article<\/a>)<\/li>\nA Family Guide: Navigating Life After a Rare Genetic Diagnosis (link<\/a>)<\/li>\nResearch participation process (Participation in English<\/a>)<\/li>\nResearch participation process (Participation in other languages<\/a>)<\/li>\nOutline of how Simons Searchlight<\/span> is funded and connection to other programs (link<\/a>)<\/li>\nSimons Searchlight<\/span>\u2019s Top 10 Accomplishments (article<\/a>)<\/li>\nSimons Searchlight<\/span> brochure (link<\/a>) – revised 2022<\/li>\nHow does blood donation or collection work? (link<\/a>)<\/li>\nHow to add CRID to participant dashboard (link<\/a>)<\/li>\n<\/ul>\n<\/div><\/div><\/div>+<\/span>Explanation Videos<\/b><\/p>\n<\/div>\nWhat is Simons Searchlight? Explained by Dr. Wendy Chung (video<\/a>)<\/li>\nSimons Searchlight Explained – An Animated Research Journey (video<\/a>)<\/li>\nHow to register in Simons Searchlight – step by step tutorial (video<\/a>)<\/li>\nJourney of Hope: Families Share Their Stories with Simons Searchlight (FB video<\/a>, YouTube video<\/a>)<\/li>\nHow Simons Searchlight and Patient Advocacy Groups Accelerate Scientific Breakthroughs Together (FB video<\/a>, Youtube video<\/a>)<\/li>\nHow to Claim Your Simons Searchlight Rewards (for completing surveys) (YouTube video<\/a>)<\/li>\nPrincipal Investigator Wendy Chung\u2019s description of Simons Searchlight <\/span>(<\/span>FB video<\/span><\/a>, <\/span>YouTube video<\/span><\/a>)<\/span><\/li>\nUnderstanding the Importance of Sharing Your Annual Medical History (FB video<\/a>, YouTube video<\/a>)<\/li>\nSimons Searchlight Genetic Counselors Supporting Our Participants (video<\/a>)<\/li>\nHow to claim gift cards (we provide incentives for completing the medical history phone call and surveys) (<\/span>YouTube video<\/span><\/a>)<\/span><\/li>\nThe importance of giving blood (YouTube video<\/a>)<\/li>\nHow to provide an electronic signature for Simons Searchlight<\/span> to request your genetics lab report (<\/span>FB video<\/span><\/a>, <\/span>YouTube video<\/span><\/a>)<\/span><\/li>\nHow is information shared back to the community (<\/span>FB video<\/span><\/a>, <\/span>YouTube video<\/span><\/a>)<\/span><\/li>\nHow long does it take to register in Simons Searchlight<\/span>(<\/span>FB video<\/span><\/a>, <\/span>YouTube video<\/span><\/a>)<\/span><\/li>\nHow is my data privacy protected (FB video<\/a>, YouTube video<\/a>)<\/li>\nWhat is Simons Searchlight (in Spanish)? (YouTube video<\/a>)<\/li>\nSimons Searchlight values collaborations to advance research (YouTube video<\/a>)<\/li>\nResearchers using Simons Searchlight data (YouTube video<\/a>)<\/li>\n<\/ul>\n<\/div><\/div><\/div>+<\/span>Resources to Share with Researchers – How to Use SFARI Base to Access Simons Searchlight<\/span> Data<\/p>\n<\/div>These slides outline how researchers can access Simons Searchlight<\/span> data through SFARI Base. It covers:<\/p>\n\nRequired materials to create an account<\/li>\nAvailable research resources<\/li>\nKey information for accessing data<\/li>\n<\/ul>\nPlease share these slides<\/a> with interested researchers and encourage them to register with SFARI Base to access our research resources.<\/p>\n<\/div><\/div><\/div>+<\/span>Other Social Media Items<\/p>\n<\/div>\n10-year anniversary video, which won a digital health award! (<\/span>link<\/span><\/a>)<\/span><\/li>\nImportance of uploading a genetics lab report (<\/span>link<\/span><\/a>)<\/span><\/li>\nLikelihood of an ASD diagnosis for participants (<\/span>link<\/span><\/a>)<\/span><\/li>\nHow common is epilepsy in participants (<\/span>link<\/span>)<\/span><\/li>\nSimons Searchlight<\/span> research publication awareness (<\/span>link<\/span><\/a>)<\/span><\/li>\nSimons Searchlight<\/span> researchers accessing data (<\/span>link<\/span><\/a>)<\/span><\/li>\nWhen participants that are dependents turn 18 years old (<\/span>link<\/span><\/a>)<\/span><\/li>\nGuardianship (link<\/a>)<\/li>\n<\/ul>\n<\/div><\/div><\/div><\/div><\/div>\nFrequently Asked Questions<\/strong><\/h2>\n+<\/span>How does Simons Searchlight<\/span> support patient advocacy groups?<\/p>\n<\/div>We have an entire “Partnerships” website<\/a> devoted to this exact topic! You can learn more about how Simons Searchlight and patient advocacy communities work together to support each other.<\/p>\nOverview: Patient advocacy groups have different levels of involvement with Simons Searchlight and we value our partnership with each of them<\/span>.<\/p>\n\nSome groups engage with us online through email and social media.<\/li>\nOthers organize conferences centered on bringing families and researchers together, and invite us to present on the research registry concept, collect participant blood, and present on updated registry results.<\/li>\nSimons Searchlight<\/span> can help provide some funding to in-person conferences that conduct research on participants at the event.<\/li>\n<\/ul>\nPatient advocacy groups are able to move research forward on their genetic condition by connecting with researchers. These researchers can request access to de-identified Simons Searchlight<\/span> data at no cost through SFARI Base<\/a>, our secure online repository.<\/p>\n<\/div><\/div><\/div>+<\/span>How can patient advocacy groups promote Simons Searchlight<\/span>?<\/p>\n<\/div>](\"https:\/\/cdn.simonssearchlight.org\/wp-content\/uploads\/2022\/04\/13094418\/how-to-participate-graphic.png\"){kind=link}