Debs, Rachel https://orcid.org/0009-0008-6769-8358
Diene, Gwenaëlle https://orcid.org/0009-0003-8970-0088
Cortadellas, Julie
Molinas, Catherine
Kermorgant, Marc
Tauber, Maïthé https://orcid.org/0000-0002-0363-7862
Pavy Le Traon, Anne https://orcid.org/0000-0002-9375-1553
Article History
Received: 16 July 2024
Accepted: 29 October 2024
First Online: 4 December 2024
Declarations
:
: The authors have no competing interests to declare that are relevant to the content of this article.
: A retrospective analysis of the data of patients with PWS and control patients was performed over the years 2014–2017 in the Toulouse University Hospital Center. Sixty-two evaluations and/or data items were gathered. In line with the French law on ethics, patients were informed that their codified data would be used for the study. According to French ethics and regulatory law (public health code), retrospective studies based on the exploitation of usual care data do not have to be submitted to an ethics committee but they do have to be declared or covered by the reference methodology of the French National Commission for Informatics and Liberties (CNIL). The collection and computer processing of personal and medical data were carried out to analyze the results of the research. The Toulouse University Hospital Center signed a commitment of compliance to the reference methodology MR-004 of the CNIL. After evaluation and validation by the data protection officer and according to the General Data Protection Regulation*, this study met all criteria and was then registered in the study data registry of the Toulouse University Hospital Center (number’s register: RnIPH 2018-34) and covered by the MR-004 (CNIL number: 2206723 v 0).This study was approved by Toulouse University Hospital Center, which confirms that the ethical requirements were fully respected in the above report. *Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016.