WES data for SIOPEN intermediate-risk neuroblastoma subgroup study

VIVO Biobank Samples Data Access Policy 1. Introduction This policy governs access to the genomic and phenotypic data from the VIVO Biobank Group studies deposited at the European Genome-phenome Archive (EGA). The data was collected for the purpose of genetic studies on childhood cancers. 2. Data Access Committee (DAC) Access to the data is managed by Newcastle University on behalf of the VIVO Biobank through the VIVO project specific Data Access Committee. Decisions on access are made exclusively based on scientific and ethical criteria in compliance with the original informed consent. 3. Terms of Access To request access, users must: • Be a bona fide researcher affiliated with a recognized research institution. • Provide a brief Research Project Description (max 500 words). • Submit a signed Data Access Agreement (DAA), which is a legally binding contract between the requester's institution and the DAC. 4. Permitted Use Data use is restricted based on the GA4GH Data Use Ontology (DUO) codes assigned to this dataset: • US (user-specific): This data use modifier indicates that use is limited to use by approved users. • Re-identification Prohibited: Requesters must agree not to attempt to re-identify any individual participant. • For additional clinical data, collaboration with members of the DAC is required. 5. Data Security Requirements Users must implement technical safeguards, including: • Storage on secure institutional computer systems behind a firewall. • Encryption of data if stored on portable devices (e.g., USB keys). • Access limited to authorized personnel listed in the DAA. 6. Publication & Acknowledgment Users must acknowledge the VIVO Biobank, members of the DAC, and the EGA in any resulting publications, citing the specific study accession number.