Data request

Are you researching FSHD or preparing to do research regarding FSHD and are you looking for longitudinal patient-reported data? Or are you looking for participants for your research into FSHD? Since 2015, the Dutch FSHD registry has been collecting the following data with the help of our participants:

  • the Updated treat-NMD core dataset for FSHD (Mul K, Kinoshita J, Dawkins H, et al. 225th ENMC international workshop: A global FSHD registry framework, November 18-20, 2016, Heemskerk, The Netherlands. Neuromuscular Disorders 2017 (27 ), 782-90;
  • quality of life data;
  • fatigue data;
  • data on depression;
  • data regarding pain.

Are you interested in using (part of) these data or contacting our participants? Please contact our registry team!

Share any question you have in a preliminary consultation to see if we can help you answer your research question (we can provide information on what variables are available and how data were collected). If your question is clear, fill in the request form below to submit your request to the FSHD registry steering board. A request form can be downloaded below. The steering board will assess your request using an assessment framework.

Request form for data and/or participants

Add attachments such as the research protocol, a consent-letter from a relevant medical ethical review committee, a short invitation (of about 1-2 pages) to be sent out to participants if the request concerns patient recruitment and any other relevant info such as used questionnaires. A positive decision from a recognised medical ethics review committee is required for a definitive decision of the steering board. A provisional decision can be made if the decision-process is still ongoing. The definitive decision will be made when the positive answer of the ethics review can be provided.

Mail to: registratieFSHD@radboudumc.nl (currently in Dutch only)

The board will decide on your request within a 4-week period, if needed extended with another period of 4 weeks.

You will find the legal basis for the FSHD registry in the cooperation agreement (currently in Dutch only), the steering board regulations and the assessment framework applied by the steering board to assess data or participant requests (currently in Dutch only).

If you have questions or requests, please contact us by sending an email to registratieFSHD@radboudumc.nl.