Community Outreach Toolkit
Join us in promoting awareness, recruitment, and engagement for the Simons Searchlight research program. You can easily share our approved images, videos, and sample text across your social media, newsletters, and websites.
Before You Share — Please Review the Guidelines Below:
- All Simons Searchlight materials must be used as provided. Because we are a research study, our content is reviewed and approved by our Institutional Review Board (IRB) and research staff.
- Only use the approved sample text alongside our images and videos.
- Do not offer any additional monetary incentives for participation. Only IRB-approved gift cards may be used.
Stay Informed with Monthly Updates: Receive our monthly updates on data, new social media resources, and progress. Fill out this short Google form to subscribe and share valuable updates with your communities.
Simons Searchlight Description
Overview of Simons Searchlight
Simons Searchlight 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 is funded by the Simons Foundation Autism Research Initiative (SFARI) which aims to better understand rare genetic neurodevelopmental conditions, specifically those associated with autism spectrum disorder (ASD).
By collecting detailed family, medical, developmental and behavioral information through online surveys and phone interviews as well as blood samples, Simons Searchlight 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, German, Italian, Portuguese and Spanish.
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.
If you have any questions, please contact their Study Coordinators at coordinator@simonssearchlight.org.
Simons Searchlight Images
Shine Your Searchlight ✨ Outreach Materials
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.
View these slides and download them for your own outreach use.
Explanation Graphics/Articles/Brochures
- Content About Searchlight for PAG website and digital outreach (link)
- Empowering Families to Take Action (article)
- How to Read the Vineland Adaptive Behavior Scales Growth Chart (article)
- A Family Guide: Navigating Life After a Rare Genetic Diagnosis (link)
- Research participation process (Participation in English)
- Research participation process (Participation in other languages)
- Outline of how Simons Searchlight is funded and connection to other programs (link)
- Simons Searchlight’s Top 10 Accomplishments (article)
- Simons Searchlight brochure (link) – revised 2022
- How does blood donation or collection work? (link)
- How to add CRID to participant dashboard (link)
Explanation Videos
- What is Simons Searchlight? Explained by Dr. Wendy Chung (video)
- Simons Searchlight Explained – An Animated Research Journey (video)
- How to register in Simons Searchlight – step by step tutorial (video)
- Journey of Hope: Families Share Their Stories with Simons Searchlight (FB video, YouTube video)
- How Simons Searchlight and Patient Advocacy Groups Accelerate Scientific Breakthroughs Together (FB video, Youtube video)
- How to Claim Your Simons Searchlight Rewards (for completing surveys) (YouTube video)
- Principal Investigator Wendy Chung’s description of Simons Searchlight (FB video, YouTube video)
- Understanding the Importance of Sharing Your Annual Medical History (FB video, YouTube video)
- Simons Searchlight Genetic Counselors Supporting Our Participants (video)
- How to claim gift cards (we provide incentives for completing the medical history phone call and surveys) (YouTube video)
- The importance of giving blood (YouTube video)
- How to provide an electronic signature for Simons Searchlight to request your genetics lab report (FB video, YouTube video)
- How is information shared back to the community (FB video, YouTube video)
- How long does it take to register in Simons Searchlight(FB video, YouTube video)
- How is my data privacy protected (FB video, YouTube video)
- What is Simons Searchlight (in Spanish)? (YouTube video)
- Simons Searchlight values collaborations to advance research (YouTube video)
- Researchers using Simons Searchlight data (YouTube video)
Resources to Share with Researchers – How to Use SFARI Base to Access Simons Searchlight Data
These slides outline how researchers can access Simons Searchlight data through SFARI Base. It covers:
- Required materials to create an account
- Available research resources
- Key information for accessing data
Please share these slides with interested researchers and encourage them to register with SFARI Base to access our research resources.
Other Social Media Items
- 10-year anniversary video, which won a digital health award! (link)
- Importance of uploading a genetics lab report (link)
- Likelihood of an ASD diagnosis for participants (link)
- How common is epilepsy in participants (link)
- Simons Searchlight research publication awareness (link)
- Simons Searchlight researchers accessing data (link)
- When participants that are dependents turn 18 years old (link)
- Guardianship (link)
Frequently Asked Questions
How does Simons Searchlight support patient advocacy groups?
We have an entire “Partnerships” website devoted to this exact topic! You can learn more about how Simons Searchlight and patient advocacy communities work together to support each other.
Overview: Patient advocacy groups have different levels of involvement with Simons Searchlight and we value our partnership with each of them.
- Some groups engage with us online through email and social media.
- 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.
- Simons Searchlight can help provide some funding to in-person conferences that conduct research on participants at the event.
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 data at no cost through SFARI Base, our secure online repository.
How can patient advocacy groups promote Simons Searchlight?
We invite you to encourage eligible families to learn more about the study.
- Relay relevant information about the study progress, such as the number of registered participants for your condition.
- Promote study initiatives (for example: “Send Simons Searchlight your lab report!” or “Remember to re-consent if your child turned 18 years old to keep participating”).
Because Simons Searchlight is a research study governed by an ethics board, all recruitment materials must be approved in advance. If you have any questions please contact us Coordinator@SimonsSearchlight.org.
Where do you direct families if they have questions about participation?
If families have any questions about participation, they can email us at coordinator@simonssearchlight.org or call us at 1-855-329-5638. We will be happy to assist with any questions or concerns, and response time is fairly fast.
What type of communication should not come from patient advocacy groups?
Research participation is an individual choice, and there are a variety of reasons why a person may choose not to participate in research. Undue influence or additional payments to families for registration are not permitted. Also, research participation status is confidential. Simons Searchlight is not permitted to inform anyone if you are or are not participating. However, participants can disclose their participation status at their discretion.
Who do you talk to about conference planning?
Simons Searchlight in collaboration with Global Genes created a conference planning toolkit to support virtual, hybrid or in-person conference planning.
How often will new outreach materials be added to the toolkit?
Outreach materials will be updated on an ongoing basis. When there is an update, we will notify you of the Simons Searchlight monthly email update and Simons Searchlight quarterly participant newsletter.
How does Simons Searchlight use Facebook, Facebook groups, LinkedIn and Twitter?
- Simons Searchlight’s main Facebook page has posts that focus on topics and uses language aimed broadly towards Simons Searchlight participants and people who are eligible for recruitment. This includes announcements on upcoming conferences, national and international advocacy days, webinars, educational materials, and registry updates.
- Simons Searchlight also has private Facebook groups for each genetic condition. These are meant for anyone interested in connecting or discussing that genetic condition, sharing personal experiences, or finding answers to questions about Simons Searchlight and approved research studies.
- Simons Searchlight uses LinkedIn as a way to connect and build relationships and raise visibility among patient advocacy community members, biopharma, industry leaders, medical professionals highlighting our funding announcements, participant stories, webinars, educational materials, and other relevant research updates.
- Simons Searchlight Twitter focuses on topics that may be of interest to the general research community, patient advocacy communities, and Simons Searchlight researchers, such as highlighting our funding announcements, updates to our data collection and data releases, research match announcements and other educational materials.