Community Outreach Toolkit
If you are interested in raising awareness and participation in the Simons Searchlight research registry, we invite you to use our prepared images, videos, and text on your social media channels, newsletters, and websites.
Please review our usage guidelines for these images.* This is meant to be a resource for you. Please contact us if you have questions or if there are other resources we can help you with.
*Guidelines for using these items: Because Simons Searchlight is a research study, images and wording included in the toolkit must be reviewed by our Institutional Review Board (IRB) and staff. Please use the approved text provided here in combination with the images and videos. Additional monetary incentives for participation are not permitted. This does not include gift cards already approved by our IRB. If there are new uses or text that you would like for recruitment, or if you have any questions regarding your use of these materials, please contact us.
Monthly Updates: Monthly Updates: Simons Searchlight sends out a monthly email with updates on data usage, new social media items, and other progress updates. If you would like to receive these updates to share with your communities, please fill out this short google form.
Community Outreach Toolkit
Guidelines for using these items: Please use the “Sample Explanation” text provided below in combination with the images and videos.
Simons Searchlight Description
Simons Searchlight is a research registry for [GENE/Copy Number Variant] that works with families and researchers around the world to help speed up research on rare genetic neurodevelopmental disorders.
By collecting detailed information and 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.
- 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)
- How does blood donation or collection work? [Will be an image]
- How do patient advocacy groups work with Simons Searchlight? [Will be an image of how we fit in a PAG toolbox]
PAG Frequently Asked Questions
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.
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 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. Please refer to our usage guidelines [LINK].
Where do you direct families if they have questions about participation?
If families have any questions about participation, they can email us at email@example.com 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?
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 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 and Simons Searchlight researchers, such as highlighting our funding announcements, updates to our data collection and data releases, and research match announcements.