Global registry for people with DRPLA
Part of Brain & nervous system, Genetic & congenital clinical trials.
This study is a global patient registry that collects information from people with DRPLA to better understand the condition over time. It may help researchers learn what to expect and how to support future treatments, and participation mainly involves giving consent and sharing your history.
Summary written for real people, not researchers, by Clin2.
Who can take part
- You (or a legal representative) can sign the informed consent form.
- You have a self-reported diagnosis of DRPLA (Dravet-related?—note: exactly DRPLA)
- If you are under the age of consent (often age 12+), you can also be asked for assent along with a parent/guardian consent.
- If you cannot consent due to cognitive limitations, a legally authorized representative must provide consent and your assent is sought when possible.
- You should not have an ataxia (coordination/balance problem) diagnosis other than DRPLA.
Quick eligibility check
Answer a few plain-language questions, based on this study's own requirements, to get a preliminary sense of fit.
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