Simons Searchlight
Simons Searchlight is an online international research program funded by the Simons Foundation Autism Research Initiative (SFARI). Participation in Simons Searchlight is open worldwide to individuals with a confirmed genetic diagnosis from their list of eligible genetic conditions, which now includes RNU4-2!
A long-standing platform for 15+ years, their primary focus is collecting natural history registry data from individuals and families with specific genetic variants associated with autism, seizures, developmental delays, ADHD, and related neurodevelopmental disorders. Currently, Simons Searchlight collects detailed family, medical, developmental, and behavioral information through online surveys.
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Create your account at: https://research.simonssearchlight.org/account/create
Learn more about the process here: https://www.simonssearchlight.org/research/
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RENU Syndrome United is partnering with Simons Searchlight to help advance research on RNU4-2-related syndrome (ReNU syndrome).
Simons Searchlight is an international online research program studying more than 185 rare genetic neurodevelopmental conditions. By joining the program and sharing your experiences through online surveys and optional blood sample collection, families contribute to research that helps scientists better understand these conditions and supports the development of improved care and future treatments.
Every family's participation makes a difference.
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Learn more about surveys and samples collection here: https://www.simonssearchlight.org/data-biospecimens/
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Contribute to research that could lead to better treatments and support.
Receive the latest data summaries for your genetic community as new findings become available.
Access individualized reports for certain surveys you complete.
Get access to an expert research team and helpful resources and connect with other families who share your diagnosis.
Be part of a growing community of families and researchers working together to make a difference.
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To participate in Simons Searchlight, the ReNU family must:
Have a confirmed genetic diagnosis of RNU4-2-related syndrome
Provide a copy of the genetic lab report
Be able to participate in one of the following languages – English, Dutch, French, German, Italian, Portuguese, or Spanish.
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Participation is completely free for families and individuals with eligible rare genetic conditions, such as RNU4-2-related syndrome.
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Participants may be eligible to claim survey gift card rewards.
Review RSU’s Research and Treatment Disclaimer here: https://www.renusyndrome.org/terms-of-service
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