NeuroPsyBit
RTSGD
NeuroPsychogenetic Bipolar Türkiye
Data Governance and Access Policy — NeuroPsyBiT Biobank
1. Overview
The NeuroPsyBiT Biobank is a national-level repository dedicated to advancing bipolar disorder research through ethically governed access to deeply phenotyped clinical data and biological samples. It operates under the joint auspices of the Research and Treatment Society of Genetic Disorders (RTSGD) and Selçuk University Medical Faculty’s Department of Psychiatry, conforming to ISO-compliant biobanking standards and Turkish (KVKK) and EU (GDPR) data protection regulations.
2. Access Eligibility
Researchers may request access to de-identified individual participant data (IPD) and biospecimens only if they meet the following criteria:•Affiliated with a recognized academic, clinical, or research institution.•Submit a detailed research proposal with clear scientific objectives, methodology, and ethical considerations.•Receive prior approval from the RTSGD–NeuroPsyBiT Data Access Committee, the Selçuk University Ethics Committee, and the Turkish Ministry of Health.
3. Data Use Agreement (DUA)
Approved researchers must sign a binding DUA that includes:
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Strict prohibition against re-identification of participants.
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Agreement not to share the data with unauthorized parties.
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Commitment to using the data only for the approved study purpose.
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Obligation to acknowledge NeuroPsyBiT and RTSGD in resulting publications.
4. Access Mechanism
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Data will be shared in a de-identified, encrypted form, accessible via a secure on-premises system at RTSGD’s data center.
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Remote access may be granted via secure, auditable remote sessions only—no full downloads or cloud transfers are permitted.
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Revocation of access will occur if the DUA is violated or ethical breaches are detected.
5. Transparency and Documentation
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All approved projects will be publicly listed on this page, including project title, investigators, affiliations, and approved research aims.
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A summary of key findings or publications arising from the data will be featured, fostering transparency and scientific collaboration.
6. Retention and Review
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Approved access is granted for 5 years from initial data provision; extensions require a renewal application to the Data Access Committee.
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The governance policy will undergo annual reviews to ensure alignment with evolving legal, ethical, and scientific standards.