Transparency Portal

The Institute of Myology Association (‘Association Institut de Myologie’ in French, AIM) contributes to the advancement of scientific research and to improving knowledge of muscle and neuromuscular diseases. It also works to improve patient care.

Transparency Portal

Reuse of health data and biological samples for research purposes

The Institute of Myology Association (AIM) contributes to the advancement of scientific research and to improving knowledge of muscle and neuromuscular diseases. It also works to improve patient care.

As part of its activities, AIM may reuse the health data and biological samples collected from patients and healthy volunteers for the purposes of scientific research, evaluations and clinical studies.

The data that may be reused are:

  • personal data collected during clinical studies and natural history studies sponsored by AIM and centralised in AIM’s health data warehouse (EDS MyoData);
  • biological samples (fluids and tissues) from patients collected by Myobank-AFM at the Institute of Myology, together with the associated personal data.

The “EDS MyoData” health data warehouse is a centralised system for storing, organising and using health data securely. It facilitates data analysis and the development of research projects in the field of myology. These studies, based on personal health data, open the way to new discoveries and are essential for improving our knowledge, particularly for rare diseases, where many questions remain.

Centralising data in EDS MyoData allows for better collaboration between researchers and could eventually lead to the development of innovative, personalised treatments. Epidemiological and health economics studies, studies using artificial intelligence, and patient cohort follow-up studies will be possible using the data held in EDS MyoData.

The regulatory framework

The reuse of health data is strictly governed by:

  • The General Data Protection Regulation (Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data);
  • The French Data Protection Act in its latest version in force (Act no. 78-17 of 6 January 1978 on information technology, data files and civil liberties);
  • The reference framework of the French data protection authority (CNIL) on the processing of personal data carried out for the purpose of creating data warehouses in the health field;
  • Deliberation no. 2018-155 of 3 May 2018 approving the reference methodology for the processing of personal data carried out in the context of research not involving the human person, and of studies and evaluations in the health field (MR-004);
  • The certification framework for the hosting of personal health data (ministerial order of 26 April 2024).


Your rights

Under Articles 15 to 18 and 21 of Regulation (EU) 2016/679 of 27 April 2016 on the protection of personal data (GDPR), you have a number of rights:

  • The right to access your personal data (right of access): you can ask the Association Institut de Myologie for a copy of the personal data it holds about you.
  • The right to correct your personal data (right to rectification) if it is inaccurate: you can ask the Association Institut de Myologie to change any incorrect personal information about you.
  • The right to be informed (right to information): you can stay informed about the research projects carried out on your personal data or your samples. To this end, you will find below the list of past and ongoing projects carried out using data from EDS MyoData.
  • The right to object to the reuse of your personal data in the health data warehouse in general, or to withdraw from a particular research project (right to object). The research projects carried out using data from EDS MyoData are listed below. If you decide not to object to the reuse of your personal data but change your mind later, you can withdraw your agreement at any time, without having to give a reason. Your decision to withdraw will apply going forward. Research projects already carried out on your personal data at the date of your objection will not be called into question.

Past and ongoing projects

[Table under construction]

Myobank-AFM specialises in the collection, preparation, storage and provision of biological resources such as human fluids and tissues, derived from residual surgical tissue. Thanks to its medical and scientific expertise, Myobank-AFM helps researchers to advance knowledge in the field of myology.

You have consented to the use of your biological samples and to the processing of your personal data by AIM, and more specifically by Myobank-AFM.

Should you wish to withdraw your consent, you can send us the consent withdrawal form completed and signed, either by email to the following address dpo@institut-myologie.org or by post to the following address: Association Institut de Myologie, Délégué à la Protection des Données (DPO), Groupe Hospitalier Pitié-Salpêtrière, Bâtiment Babinski, 47/83 boulevard de l’Hôpital, 75 651 Paris Cedex 13, France.

Please note that the withdrawal of your consent will only take effect for the future. Research projects already carried out on your samples at the date of your withdrawal will not be called into question.

Past and ongoing projects

[Table under construction]

How can you exercise your rights and who should you contact?

You may decide to exercise the rights listed above at any time: this decision does not have to be justified and will not affect your medical care. To exercise these rights, you can do any of the following:

  • contact the doctor who enrolled you in the clinical study or who provides your follow-up within the Service of Neuro-Myology at the Pitié-Salpêtrière or within I-Motion Pediatric or I-Motion Adults, who will forward your request to the Data Protection Officer (DPO) at the Association Institut de Myologie;
  • send us an objection request or a consent withdrawal request by downloading and completing the objection form or the consent withdrawal form provided for this purpose, then returning it to us:
    • by email to the following address: dpo@institut-myologie.org
    • or by post to the following address: Association Institut de Myologie, Délégué à la Protection des Données (DPO), Bâtiment Babinski, 47/83 boulevard de l’Hôpital, 75 651 Paris Cedex 13, France
  • send a message to the Data Protection Officer (DPO) of the Association Institut de Myologie:
    • by email to the following address: dpo@institut-myologie.org
    • or by post to the following address: Association Institut de Myologie, Délégué à la Protection des Données (DPO), Bâtiment Babinski, 47/83 boulevard de l’Hôpital, 75 651 Paris Cedex 13, France

If you consider that your rights are not being respected or that your data is not being processed in accordance with the applicable regulations, you also have the right to lodge a complaint with the CNIL.