Participating in Other Languages
Do you have a genetic disorder listed on the Simons Searchlight Gene List? Simons Searchlight is available in several languages to help non-English speakers join our research program.
Right now, you can participate in Simons Searchlight in the following languages (click below to see our brochure in each language):
If you prefer to participate in a language other than English, follow the steps below. Please note that not all surveys are available in every language, so your survey list may differ from those participating in English. The graphic below shows which surveys are available based on your selected language.
We hope to continue to open up our research community to more families with additional languages.
Enrollment Process for Other Languages
Step 2
Consent for Research Participation
The consent form has been officially translated by a medical translator.
Step 3
Add a Child with a Genetic Disorder
If you have a child who has a genetic disorder, add them and complete their consent.
Step 4
Submit a Lab Report
Upload your or your child’s original genetics lab report that provides the detail on your genetic variation. No need to translate this document for us.
Step 5
Complete a Medical History Phone Call
Schedule a medical history phone call with our genetic counselor. A medical translator will be on the phone with us to help translate the information accurately.
Step 6
Take Online Surveys
Check your Simons Searchlight dashboard for surveys in your language. Stay up to date by reading Simons Searchlight emails and following us on social media!
Step 7
Continue Participating
We add surveys to the study regularly, and some surveys are repeated every year, along with a follow-up medical history phone call. We all learn more by tracking changes over time.
How do we choose languages to add?
Languages have been chosen based on the most common languages requested by families. We have plans for more languages and will reassess this list periodically.
What happens to my data that I provide to Simons Searchlight ?
Once you provide your data, it is reviewed by the Simons Searchlight team. Your data will be combined with other data that we freely provide to qualified researchers around the world who apply to access it. Before we share your data, your identifying information is removed in order to protect your privacy.