The committee has recently been organised because of the growing number of studies and possible future clinical trials with the purpose of informing our base.
The committee judges requests for approaching our base to participate in studies and prevent them from being part of multiple studies that might interfere with each other. Also, protect them and inform them about possible negative side-effects. The committee works together with the Scientific Advisory Board (S.A.B.) of the Dutch CAA Foundation. Our goal is to protect the small and vulnerable population of people with HCHWA-D.
The committee, considering privacy protocols, will try to get an overview of participants in different studies and relate them to the ‘Stamboomonderzoek’. Every applicant is asked to provide their research protocol.
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