Coutelle, Romain
Boedec, Morgane
Vermeulen, Karlijn
Kummeling, Joost
Koolen, David A.
Kleefstra, Tjitske
Fournier, Camille
Colin, Florent
Strehle, Axelle
Geneviève, David
Burger, Pauline
Mandel, Jean-Louis
Article History
Received: 9 November 2021
Accepted: 9 August 2022
First Online: 25 August 2022
Declarations
:
: GenIDA satisfies all ethical requirements: the research is carried out in accordance with the provisions of the French Data Protection Act (French law of 6 January 1978, amended by the law of 6 August 2004 on the protection of individuals with regard to the processing of personal data), and complies with the General Data Protection Regulation 2016/679 (GDPR).The study has been declared to the “Commission Nationale Informatique et Libertés” (CNIL) on 27/11/2015, number 1907912v0. It has been reviewed and approved by the Ethics Evaluation Committee of INSERM—Institut National de la Santé Et de la Recherche Médicale—(IORG0003254, FWA00005831), the Institutional Review Board (IRB00003888) of the French Institute of Medical Research and Health on 15/11/2016, number 16–338, and on 04/09/2019, number 16–338 bis.The authorisations obtained for GenIDA allow for this type of incidental study without seeking specific legal authorisation again as participants are asked to give their informed consent before accessing any questionnaire (general questionnaire, COVID questionnaire, etc.). This consent form details the terms and conditions of participation in our research and specifies that participation is free and that the agreement to participate can be withdrawn at any time, without justification of any kind, simply by logging back into one's account on the GenIDA website. Hence, informed consent was obtained from all study participants, i.e., either the subject him/herself or his/her relative responding to the study on behalf of the person with ID (parent or legal guardian(s)). The survey was completed using a pseudonym for participants; no identifiers other than year and month of birth (not reported in this manuscript) and country of residence were collected.All methods were performed in accordance with the relevant guidelines and regulations (Declaration of Helsinki).
: Not applicable since no identifying information is presented in the manuscript.
: The authors declare that they have no competing interests.