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 individuals to participate in the data registry.

Currently, Simons Searchlight is available in the following languages:

  • English
  • 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 things to do may be different from someone who participates in English.

 

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Enrollment Process for Other Languages

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Step 1

Register Online

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

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Step 2

Complete Consent

The consent form has been officially translated by a medical translator.

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Step 3

Add a Child with a Genetic Change

If you have a child who has the genetic change, add them and complete their consent.

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Step 4

Submit a Lab Report

Upload your or your child’s original genetic lab report that provides the detail on your genetic variation. No need to translate this document for us.

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Step 5

Complete Medical History Phone Call

Schedule your medical history phone call with our genetic counselor. A medical translator will be on the phone with us to help translate the information accurately.

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Step 6

Survey Participation

Check your dashboard for a translated survey. Follow us on social media for study updates and helpful information!

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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.