{"id":9738,"date":"2021-01-28T12:37:04","date_gmt":"2021-01-28T17:37:04","guid":{"rendered":"https:\/\/www.simonssearchlight.org\/?page_id=9738"},"modified":"2021-03-30T15:12:18","modified_gmt":"2021-03-30T19:12:18","slug":"10-years-10-landmark-achievements","status":"publish","type":"page","link":"https:\/\/www.simonssearchlight.org\/10-years-10-landmark-achievements\/","title":{"rendered":"10 landmark achievements for Simons Searchlight in the last 10 years"},"content":{"rendered":"

Date published<\/em><\/strong>: February 3, 2021<\/em><\/strong><\/p>\n

Simons Searchlight<\/span> is an evolving research registry. As we look to the next 10 years, here are some highlights of what we have achieved together so far.<\/p>\n

 <\/p>\n

1.\u00a0First Participants<\/strong><\/p>\n

Simons Searchlight<\/span>\u2019s first participants were from the USA, Canada, and Australia (orange). We now have participants from 47 different countries (turquoise).<\/p>\n

\"\"<\/p>\n

Simons Searchlight<\/span> is one of the largest international rare disease registries. If you have a genetic diagnosis on our\u00a0list<\/a>, consider registering<\/a>!<\/p>\n

 <\/p>\n

2.\u00a0<\/strong>First Family Conference<\/strong><\/p>\n

Simons Searchlight<\/span> (formerly Simons VIP) participants held their first in person<\/em> family conference on July 23, 2011 in Gatlinburg, Tennessee for 16p11.2 deletion and duplication families.<\/p>\n

\"\"<\/p>\n

Simons Searchlight<\/span>\u2019s online meeting recordings can be found here<\/a>.<\/p>\n

 <\/p>\n

3.\u00a0Online Participation<\/strong><\/p>\n

Our study was originally in person and transitioned to an online platform in 2014. This has allowed more families to join and provided more detailed information a few times a year.<\/p>\n

\"\"<\/p>\n

Simons Searchlight<\/span> has registered more than<\/em> 1,500 individuals with a genetic diagnosis.<\/p>\n

 <\/p>\n

4.\u00a0Publications<\/strong><\/p>\n

To date, researchers have used Simons Searchlight<\/span> data in 63 publications and preprints.<\/p>\n

\"\"<\/p>\n

You can find our list of publications here<\/a>. Make sure to click the \u201cUses Resources From: Simons Searchlight<\/span>\u201d filter.<\/p>\n

 <\/p>\n

5.\u00a0Single Gene Publications<\/strong><\/p>\n

First publication from a monogenic condition on the Simons Searchlight<\/span> gene list was in 2018.<\/p>\n

\"\"<\/p>\n

This publication can be found here<\/a>. Another publication using SCN2A Simons Searchlight<\/span> data was published in 2020.<\/p>\n

 <\/p>\n

6.\u00a0Becoming Simons Searchlight<\/span><\/strong><\/p>\n

Through the collaboration with families, Simons VIP Connect became Simons Searchlight<\/span> in Spring 2019 to\u00a0represent the beacon of light provided for our journey by research.<\/p>\n

\"\"<\/p>\n

The name Simons Searchlight<\/span> better embodies our mission to shed light on conditions by building strong partnerships between researchers and families.<\/p>\n

 <\/p>\n

7.\u00a0Making Stem Cells<\/strong><\/p>\n

In the fall of 2020, the Simons Foundation<\/span> invested heavily in making induced pluripotent stem cells, or iPS cells, from Simons Searchlight<\/span> participants.<\/p>\n

\"\"<\/p>\n

Our short video on iPS cells can be found here<\/a>. The Simons Foundation<\/span> Autism Research Initiative (SFARI) announcement can be found here<\/a>.<\/p>\n

 <\/p>\n

8.\u00a0Research Match<\/strong><\/p>\n

Simons Searchlight<\/span> Research Match launched in 2020. This allows researchers to add new surveys not already included in the core study, as well as recruit participants to new research studies. All of the data are returned to the Simons Searchlight<\/span> database to help build the registry and provide more information to future researchers with no additional burden on you.<\/p>\n

\"\"<\/p>\n

Researchers can apply for the Research Match program through SFARI Base<\/a>, the same website they use to request data.<\/p>\n

 <\/p>\n

9. Data Access for Researchers<\/strong><\/p>\n

130 researchers have accessed the Simons Searchlight<\/span> data to date!<\/p>\n

\"\"<\/p>\n

Researchers request de-identified data, samples, or research match projects through SFARI Base<\/a>. De-identified data are data in which any identifying information has been removed.<\/p>\n

 <\/p>\n

10.\u00a0Gene Therapy Workshop<\/strong><\/p>\n

In the winter of 2020, SFARI gathered a group of researchers for a gene therapy workshop to help accelerate the development of treatments.<\/p>\n

\"\"<\/p>\n

Read here<\/a> to find out more about this workshop.<\/p>\n","protected":false},"excerpt":{"rendered":"

Date published: February 3, 2021 Simons Searchlight is an evolving research registry. As we look to the next 10 years, here are some highlights of what we have achieved together so far.   1.\u00a0First Participants Simons Searchlight\u2019s first participants were from the USA, Canada, and Australia (orange). We now have participants from 47 different countries […]<\/p>\n","protected":false},"author":6,"featured_media":0,"parent":0,"menu_order":0,"comment_status":"closed","ping_status":"closed","template":"","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\/9738"}],"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\/6"}],"replies":[{"embeddable":true,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/comments?post=9738"}],"version-history":[{"count":26,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/9738\/revisions"}],"predecessor-version":[{"id":10336,"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/pages\/9738\/revisions\/10336"}],"wp:attachment":[{"href":"https:\/\/www.simonssearchlight.org\/wp-json\/wp\/v2\/media?parent=9738"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}