Présentation
Research Description
The objective of this research is to understand the phenotypic impacts of genetic alterations in the SHANK2 and SHANK3 genes and to compare them with those caused by other genes involved in neurodevelopmental disorders. The ultimate goal is to help physicians better diagnose and support children with these disorders.
Your personal data: Information and specific rights
What is personal data?
Your personal data, including your health data, will be processed by Institut Pasteur in its capacity as data controller.
Personal data is information about you. This data enables us to know your identity:
- Either directly, through your name or address
- Or indirectly, through the use of a code in place of your identity.
Why is your personal data collected and who is responsible for it?
Institut Pasteur as the responsible party will carry out analyses with regard to the purposes presented in this document. This use is possible in accordance with Article 5 and Article 9 of the General Data Protection Regulation (GDPR) as the following conditions are met:
- it is necessary for scientific research purposes
- appropriate measures preserve the confidentiality of your information
- it meets a public health objective and therefore of public interest
What categories of personal data are involved?
Your child’s personal data required for this scientific research from the PMSF database are:
- Genetic data (genetic alterations in the SHANK3 gene)
- Phenotypic data
- Demographic data
- Other data
Data sources and processing by Institut Pasteur
The data processed are the genetic data of individuals who have consented to their data being shared to the scientific community in databases.
The personal data contained in these databases cannot be used to identify the individuals to whom they relate.
Moreover, this study of Institut Pasteur is being carried out after all the necessary procedures have been completed with the CNIL and the project has been registered on the Health Data Hub directory.
Only research laboratory staff may access the data required for the research, in compliance with the professional secrecy to which they are subject in accordance with article 226-13 of the French penal code. Access is granted for the duration of the research via the AllofUs and UKBiobank database platforms, without exporting personal data. Under no circumstances does Institut Pasteur have direct or indirect access to directly identifying data. At the end of the research, Institut Pasteur will only have access to aggregated and anonymous data that will not allow any re-identification.
The presentation of the results of this study will in no way enable the direct or indirect identification of the persons concerned. And no matching (cross-referencing) of results with other personal data is possible.
Would you like further information?
See the information sheet: