Frequently asked questions

Can’t find the answer you’re looking for? Reach out to our trusted researchers.

The Test Site  is a health and research platform created by the Lumiio Team.  The platform connects patients and researchers with valuable data and information about diseases. When you join The Lumiio Platform and share your information, you help speed testing research and help all people with living a better life.

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The age of legal adulthood (also called “age of majority”) is the age at which a person is legally recognized as an adult and can make decisions on their own behalf - including singing contracts, giving consent, and managing personal information. 

This legal milestone is why youth participants must re-consent themselves when they reach this age - even if a parent or guardian previously consented on their behalf.
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Federal and international guidelines require a person to sign an informed consent form to participate in research studies (including a research platform like BetterLife FSHD).  Parents/legal guardians are allowed to sign-up their children into BetterLife, since they are considered “minors”. However, when a child reaches the age of legal adulthood (also called “age of majority”) they are now able to sign a consent form for themselves. Your child is turning the age of legal adulthood soon. This means they are now able to choose if they would like to continue participating in BetterLife. In order to follow legal guidelines and ensure a smooth transition of their research information we have outlined the transition steps below.