WES data from optic atrophy study

Present data access policy aims to protect data confidentiality and control secondary research use

Investigators approved to download controlled-access data and their institutions are expected to abide by the following conditions for the secondary research use, further detailed in the Data Access Agreement document: • Using the data only for the approved research; • Protecting data confidentiality; • Following, as appropriate, all applicable national, tribal, and state laws and regulations, as well as relevant institutional policies and procedures for handling genomic data; • Not attempting to identify individual participants from whom the data were obtained; • Not selling any of the data obtained from EGA repository; • Not sharing any of the data obtained from EGA repository with individuals other than those listed in the data access request; • Acknowledging in all oral or written presentations, disclosures, or publications the contributing investigator(s) who conducted the original study, the funding organization(s) that supported the work, the specific dataset(s) and applicable accession number(s), and the EGA repository through which the investigator accessed any data. Investigators who are approved to use controlled-access data are expected to follow guidance on security best practices that outlines data security protections (e.g., physical security measures and user training) to ensure that the data are kept secure and not released to any person not permitted to access the data.