Research committee

Coordination of HCHWA-D and CAA research

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.

Purpose

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.

Procedure

1. Every study or trial that involves patients with HCHWA-D is presented to the committee.
2. Every study is presented to the S.A.B. When two applications appear to interfere with each other, the S.A.B. advices the committee. This advice is supplied to our base through our website. In case of conflicting trials, the same procedure will be followed. This way applications are judged objectively.
3. The committee forms a definitive advice, considering the advice of the S.A.B. 
4. The applicant is informed in writing.
5. If approved by the committee, the study is added to our overview of current studies.
   

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.

Committee Members

• Chairman: Mr. H.M. Hueting, MSc. (Chairman HCHWA-D Association)
• Secretary: Ms. A.M. Potters (Board member) HCHWA-D Association)
• Members: Ms. Dr. G.M. Terwindt, neurologist, LUMC, Ms. Dr. M.J.H. Wermer, neurologist LUMC and representative S.A.B, Mr. Dr. J. van der Grond, Head of Radiology Dpt., consultancy center, LUMC, Mr. P. van der Zande, president Dutch CAA Foundation, Mr. J. van Rijn, (board member HCHWA-D Association).

Any questions or remarks? Contact us: onderzoekscommissie@hchwa-d.nl.