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This approval included an informed consent form and a detailed information sheet for patients. According to the article R. 1131\u20134 of the French Public Health Code, for the participants who are under 18\u00a0yr., the consent has been given by both mother and father during clinical and genetic counseling. In the three cases, there were the natural parents which have the parental authority. In addition, the consent of the minor is systematically sought if he is able to express his will and participate in the decision. The clinical and genetic studies were registered by the- Protocol Registration and Results System (PRS) receipt under the reference NCT02829853.","order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval and consent to participate"}},{"value":"The SARCFAM protocol was presented to the ethical committee (CPP LYON SUD EST \u2013 2 \u2013 REF IRB 00009118) dated September 21, 2016 and includes consent for genetic studies and an information document on the objectives of genetic analysis and the scientific SARCFAM project. This document is an informed consent for the publication of scientific and clinical data subject to a complete anonymity of the information. Our study does not present any photographic data. This informed consent is valid for adult patients and for children (<\u200918\u00a0yr) after signature of both legal parents.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent for publication"}},{"value":"The authors declare that they have no competing interests.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}},{"value":"Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Publisher\u2019s Note"}}],"article-number":"23"}}