Outreach Toolkit

 

Join us in raising awareness and engagement in the Simons Searchlight research program! Share our ready-to-use images, videos, and text on social media, newsletters, and websites.

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.

*Guidelines: As a research study, Simons Searchlight 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.

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Community Outreach Toolkit

Resources

Guidelines for using these items: Please use the “Sample Explanation” text provided below in combination with the images and videos.

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Simons Searchlight Description

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 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, and Spanish, and more languages are coming soon.

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.

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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.

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Explanation Graphics/Articles/Brochures

  • 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, through the Simons Foundation non-profit and connection to other programs
  • Simons Searchlight’s Top 10 Accomplishments (article)
  • Simons Searchlight brochure (link) – revised 2022
  • How does blood donation or collection work? (link)
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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)
  • Principal Investigator Wendy Chung’s description of Simons Searchlight (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)
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Resources to Share with Researchers

How to Use SFARI Base to Access Simons Searchlight Data – slides to download

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 this with interested researchers and encourage them to register with SFARI Base to access our research resources.

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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

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How does Simons Searchlight support patient advocacy groups?

Patient advocacy groups have different levels of involvement with Simons Searchlight.

  • 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.

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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.

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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.

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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.

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Who do you talk to about conference planning?

Simons Searchlight put together tips to help in the process of virtual or in-person conference planning. Learn more here or you can email us at coordinator@simonssearchlight.org

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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.

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How does Simons Searchlight use Facebook 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 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.