Burger, Pauline https://orcid.org/0000-0003-2109-5451
Colin, Florent
Strehle, Axelle
Mazzucotelli, Timothée
Collot, Nicole
Coutelle, Romain
Durand, Benjamin
Bouman, Arianne
Landau Prat, Daphna
Kleefstra, Tjitske
Parrend, Pierre
Piton, Amélie
Koolen, David A.
Mandel, Jean-Louis
Funding for this research was provided by:
Institute for Advanced Studies of the University of Strasbourg
Roche Fund for Personalized Medicine
Fondation Jérôme Lejeune
Groupement d’Intérêt Scientifique Autisme et Troubles du Neuro-Développement
Article History
Received: 22 July 2022
Accepted: 15 November 2022
First Online: 27 November 2022
Declarations
:
: The authors have no relevant financial or non-financial interests to disclose.
: 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 regarding the processing of personal data), and complies with the General Data Protection Regulation 2016/679 (GDPR). The study has been declared to the French Commission on Information Technology and Liberties 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. Participants are asked to read the information note and to give their informed consent before accessing any questionnaire on the GenIDA website (general questionnaire, Covid-19 related lockdown questionnaire, etc.). This consent form details the terms and conditions of participation in the GenIDA research. It specifies that participation is free and that the agreement to participate can be withdrawn at any time, without justification of any kind, simply by logging back into one's account on the GenIDA website.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 is obtained from all participants to the GenIDA studies, 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)).