Why join the Simons Searchlight patient registry?
Simons Searchlight is a research registry for DLG4 Synaptopathy/SHINE Syndrome 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 DLG4 Synaptopathy 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. Click the button to register, or review the video below for step-by-step instructions.
In order to create a valuable collection of data we need as many participants as possible. This will help ensure a proper representation of our SHINE families and maximize the value of the results. By participating in the Simons Searchlight registry you are helping families, patients, and medical providers to have a better understanding of SHINE Syndrome and providing critical data for researchers to utilize in their efforts to find answers and even possible treatments plans. We need you.
Click the Simons Searchlight logo to learn more about the registration process and set up an account. You can also view the Simons registration brochure here for more information. All of the survey steps can be completed at your leisure, and Simons is very accommodating to registrant schedules for any interviews.
Simons Searchlight is currently available in English, Dutch, French and Spanish with more to come! If you would like to participate in a language other than English, please use the button below. Be aware that not all surveys are available in non-English formats, and they must be completed in the language in which you provide consent. For the most complete results, please consider registering in English if possible.
Please refer to Simons Searchlight’s FAQ page for any other questions, or feel free to reach out to us on social media or through the Contact page.