About
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 and that of your child (including health data) will be processed by Institut Pasteur as part of this research in its capacity as data controller.
Personal data is information about you. In the context of research, they are coded so that you cannot be directly identified.
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 is therefore of public interest
What categories of personal data are involved?
The personal data required for this scientific research are:
- Genetic data (e.g. the genetic variant affecting the SHANK3 gene)
- Clinical data (e.g. developmental milestones, presence of autism and type of medication)
- Demographic data
Data sources and processing by Institut Pasteur
The data processed are the health data of individuals who have consented to their data being shared to the scientific community in databases (e.g. PMS DataHub).
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. Download is granted for the duration of the research. Under no circumstances does Institut Pasteur have direct or indirect access to directly identifying data. At the end of the research, Institut Pasteur will destroy all data and 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 to object to the reuse of your data for this research project or obtain more information?
Please refer to the information sheet you received from Institut Pasteur.
Overall research results
Upcoming