Access rules to Rett database network
There are three different levels of access:
- Public access
Public has access to the general information and to the description of content.
- Aggregated data access
Registered users have access to aggregated data only. Registered users have to disclose their identity, affiliation and have to agree to the data protection policy (HBGRD Human Biobanks and Genetics Research Databases guidelines).
- Full access
Access to individual data and statistical analysis is be given upon the submission of a research proposal to the scientific review board composed by the major contributors (more than 50 patients).
The scientific review board may decide the term of access for example scientific collaboration, or acknowledgement or citation of the paper that describe the database (key contributors will be coauthors). Then there will be an approval by the local ethic committee of the University hosting the database.