Participating in Other Languages

Simons Searchlight is now available in languages other than English. Our goal is to offer a way for non-English speaking people to participate in the research program.

Currently, Simons Searchlight is available in the following languages:

• English
• Dutch
• French
• Spanish
• More to come

If you are not comfortable participating in English and are fluent in one of the languages on our list, we will ask you to complete the following steps. Not all of our surveys are translated into each language, so your list of surveys may be different from someone who participates in English.

Enrollment Process for Other Languages

Step 1

Register Online

Start by clicking “Join Us Today” to register in your preferred language.

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.

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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.

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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.