Blokhuis, Anna M. http://orcid.org/0000-0002-0641-0057
Deenen, Johanna C. W.
Voermans, Nicol C.
van Engelen, Baziel G. M.
Kievit, Wietske
Groothuis, Jan T.
Article History
Received: 4 January 2021
Revised: 19 March 2021
Accepted: 3 May 2021
First Online: 27 May 2021
Declarations
:
: AB and JD declare that they have no conflict of interest. NV is member of the scientific board of Dynacure (not related to this study) and received funding for several studies by the Prinses Beatrix Spierfonds and Spieren voor Spieren (not related to this study). BE reports grants from Global FSH, grants from Stichting Spieren voor Spieren, grants from Prinses Beatrix Spierfonds, grants from Dutch FSHD Foundation, personal fees and non-financial support from Fulcrum, personal fees from Facio during the conduct of the study; grants from European Union’s Horizon 2020 research and innovation programme (Murab), grants from Netherlands Organisation for Scientific Research (NWO), grants from The Netherlands Organisation for Health Research and Development (ZonMw), grants from Association Francaise contre les Myopathies, outside the submitted work; In addition, BE has a patent EP20120740236 with royalties paid to Euroimmun. JG reports grants from Prinses Beatrix Spierfonds and Fulcrum Therapeutics.
: Study ethical approval was granted by the Medical Ethical Committee of the Radboud university medical center (2018–4055). The study was performed in line with the principles of the 1964 Helsinki Declaration.
: The questionnaires were incorporated in the Dutch FSHD registry after approval of the registry steering board, therefore, the informed consent for participation in the registry sufficed.