A study you can actually read
Your condition is rare. Feeling informed shouldn’t be.
A registry and study companion written for patients first — what's being tested, what participation asks of you, and what the data does after you share it. Plain language, verified translations, nothing buried.
Consent in plain wordsEvery clause paired with a human-readable version, reviewed by patients before lawyers ship it.
Your data, traceableSee which studies used your contribution and what they found — participation shouldn't be a void.
Care team includedShare a physician view in one tap; your specialist sees what you see, worded for them.
6th-gradereading level, enforced
14languages, clinically reviewed
100%of consent clauses paired with plain language
What the form says
“Biospecimens may be retained for ancillary investigations subject to IRB-approved protocols…”
What it means
“We may keep your samples for related future studies. A review board approves each one. You can say no and still participate.”