Why Join Simons Searchlight?
Help accelerate research into rare genetic neurodevelopmental disorders.
Simons Searchlight is an online research program of over 185 rare conditions. Qualified researchers can use this database to help advance knowledge and develop better therapies.
Thinking about joining Simons Searchlight? Here’s how your family can make a difference.
We work with families, researchers, and patient advocacy communities around the world to better understand rare genetic conditions.
Our mission is to accelerate research by collecting high-quality, standardized natural history data and providing helpful resources along the way. Every family’s contribution matters, and we’re committed to making your participation meaningful.
Are You Eligible?
To participate in Simons Searchlight, you must:
- Do you have a confirmed genetic diagnosis from our list of eligible genetic conditions?
- Do you have a copy of your or your child’s or dependent’s genetic lab report?
- Can you participate in one of the following languages – English, Dutch, French, German, Italian, Portuguese, or Spanish?
If you meet these three criteria, please join us! It will take about 20 minutes. You can then take online surveys and donate an optional blood sample to help researchers learn more.
The Benefits of Joining
Why participate?
- 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.
How to Join and What to Expect
How to get started
- Get yourself acquainted with Simons Searchlight by reviewing the consent document.
- Register for Simons Searchlight and sign the consent form for yourself and/or your child or dependent with an eligible genetic diagnosis. This is a required step to participate in Simons Searchlight.
What’s next?
Upload the genetic lab report for your child/dependent showing an eligible diagnosis.
- Our team of genetic counselors will review the report to confirm your eligibility and match you with the appropriate genetic community. You will be notified by email about the outcome of the review.
Add family members to your Simons Searchlight account
- The primary parent or guardian creates a research account, adds profiles for each dependent family member with a genetic disorder, up to two unaffected, dependent siblings, and completes all consent forms. They can also invite the other biological parent to join. Each independent adult must have their own separate account. Please contact us if you have questions about how to add other relatives in your family.
What Does Participation Involve?
Complete online surveys and earn rewards
- Share information about development, behavior, and health to support rare disease research. Learn more.
- You will earn online gift card rewards as a thank-you for your time.
Provide an optional blood sample
- You may be invited to give a blood sample to help researchers learn more about your genetic condition. Learn more.
Learn and participate in new research studies and opportunities tailored to your condition.
Our Research Process & Commitment to Data Privacy
- Take a moment to review “Our Commitment” page for an overview of Simons Searchlight’s mission.
- Your information is secure and private.You can learn more about our long-term and ongoing commitment to data privacy and security. If you want to learn how Simons Searchlight supports families and researchers alike, visit our “Research Process” page and review our study brochure.
- If you have questions, you can always reach out to us at coordinator@simonssearchlight.org.
We can't wait for you to start this journey with us!
Let’s work together to advance our understanding of rare genetic neurodevelopmental disorders. Ready to get started?
If participating in Simons Searchlight is not right for you or your family, but you want to stay connected with us, please sign up for our newsletter and follow us on social media!