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Authors
Karazi, Walaa
Scalco, Renata S.
Stemmerik, Mads G.
Løkken, Nicoline
Lucia, Alejandro
Santalla, Alfredo
Martinuzzi, Andrea
Vavla, Marinela
Reni, Gianluigi
Toscano, Antonio
Musumeci, Olimpia
Kouwenberg, Carlyn V.
Laforêt, Pascal
Millán, Beatriz San
Vieitez, Irene
Siciliano, Gabriele
Kühnle, Enrico
Trost, Rebecca
Sacconi, Sabrina
Durmus, Hacer
Kierdaszuk, Biruta
Wakelin, Andrew
Andreu, Antoni L.
Pinós, Tomàs
Marti, Ramon
Quinlivan, Ros
Vissing, John
Voermans, Nicol C. http://orcid.org/0000-0002-5837-7295
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Funding
Funding for this research was provided by:
Stichting McArdle
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Article History
Received: 22 March 2023
Accepted: 10 July 2023
First Online: 25 July 2023
Declarations
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: The registry was designed under the guidance and consensus of EUROMAC members at specific meetings during the first months of the EUROMAC project. EUROMAC members were twenty collaborating partners from eight European countries (Denmark, France, Germany, Greece, Italy, Spain, Turkey and United Kingdom) and USA. The Netherlands and Poland joined the project later and contributed individuals to the registry. The registry obtained the approval of all local Institutional review Boards for patient entry via the registry website (). The technical setup and data security for the registry are detailed in []. After review by people affected by GSDs and by a patient representative to ensure clarity [], the participant information sheet and consent form were translated into the languages of the participating countries and adapted to follow local regulations.
: All participants gave informed consent for analysis and publication of the data obtained from this study.
: There are no competing interests.
