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DATA SECURITY

HOW CBTN PROTECTS PARTICIPANT PRIVACY

The Children’s Brain Tumor Network (CBTN) is committed to advancing pediatric brain tumor research while protecting the privacy, dignity, and trust of the children and families who make this work possible.

CBTN data and research resources, including genomic data, biospecimens, models, and imaging, are made available through controlled-access processes designed to support responsible, scientifically valid research. These safeguards help ensure that CBTN resources are used only by approved researchers for approved research purposes.

CONTROLLED ACCESS AND RESPONSIBLE USE

CBTN uses a controlled-access model for sensitive participant data and research resources.
This means:

  • Participant data is de-identified before it is shared
  • Access is limited to approved researchers and institutions
  • Research requests are reviewed by the CBTN Scientific Committee before access is granted
  • Data and resources may only be used for the approved research purpose
  • Use must align with participant consent, institutional requirements, and applicable policies

The CBTN pediatric brain tumor genomic dataset is available through the Kids First Data Resource Center Portal, which follows established controlled-access processes, including NIH-designated systems such as dbGaP and secure analysis environments such as CAVATICA.

CBTN biospecimens, models, and imaging are gated through the CBTN request submission form. Researchers must apply, share project details, and receive approval from the CBTN Scientific Committee before access is granted.

RESPONSIBLE RESEARCH ACCESS

De-identification and Data Safeguards

Before CBTN participant data is shared, direct identifiers such as names, contact information, and home addresses are removed. Researchers may receive limited clinical and demographic details that are important for scientific analysis, such as age, sex, diagnosis, tumor type, or treatment-related information, but they do not receive information that directly identifies a participant.

These safeguards help protect participant privacy while allowing researchers to study patterns that may lead to better understanding, treatments, and outcomes for children with brain tumors.

Secure, Authorized Access

Access to CBTN data is limited to approved investigators working within appropriate research environments. For controlled genomic data, this may include secure cloud-based platforms, where access is restricted to authorized users with approved credentials.

Within these environments:

  • Access is limited to approved users
  • Data use is governed by approved research purposes
  • Activity may be logged, monitored, and reviewed
  • Researchers must follow all applicable data use and security requirements

Access to CBTN Biospecimens, Models, and Imaging

CBTN biospecimens, models, and imaging represent deeply valuable research resources made possible through the generosity of patients and families. These resources are treated with care, respect, and scientific responsibility.

Biospecimens

CBTN biospecimens come directly from patients and are rare, valuable, and deeply meaningful. Access is carefully reviewed to ensure that each request supports scientifically valid research and makes responsible use of these limited resources.

If a request is approved, CBTN coordinates the release and shipment of materials through established operational processes. This may include coordination with CBTN Operations and the shipment of samples under appropriate handling conditions, such as dry ice and overnight delivery when required.

Models

CBTN pre-clinical models are critical tools for pediatric brain tumor research and must be used with the same level of care and respect as the patient-contributed materials from which they are derived. Access is reviewed to ensure the proposed research is valid, appropriate, and aligned with the consent and purpose under which the resource is available.

Imaging

CBTN imaging data is collected as part of a child’s care and treatment. Because these images reflect personal medical experiences, access is handled with respect and within the larger framework of participant privacy, de-identification, and responsible research use.

Review and Approval Process

Researchers requesting access to CBTN-controlled resources must submit project details through the appropriate request form. Requests are reviewed for scientific validity, feasibility, and alignment with CBTN policies and participant consent.

Review Process

As part of this review, CBTN considers whether:

  • The proposed research is scientifically valid
  • The request aligns with participant consent and resource use requirements
  • The investigator and institution are qualified to receive and use the requested resource
  • The work avoids unnecessary duplication of experiments already completed or underway

When appropriate, CBTN may help connect investigators working in similar areas to strengthen collaboration and reduce unnecessary duplication.

Researcher and Institutional Responsibilities

Approved researchers are responsible for using CBTN data and resources only for the approved research purpose. They must follow all applicable data use, privacy, security, and institutional requirements.

Researchers may not attempt to identify or contact participants. Institutions are also responsible for ensuring that their researchers follow approved protocols, data use requirements, and security practices.

For physical research materials such as biospecimens or models, researchers and institutions must have the appropriate credentials, approvals, and infrastructure to receive, store, handle, and use the materials responsibly.

Monitoring, Compliance, and Enforcement

CBTN uses review, governance, and access controls to support responsible use of data and research resources. Misuse of CBTN data or resources may result in suspension or termination of access, institutional notification, and other appropriate actions.

These safeguards are designed to protect participants and families while preserving the integrity of the research made possible through their contributions.

Our Commitment to Children and Families

CBTN exists because children and families have chosen to contribute to research in the hope of changing what’s possible for others.

We’re committed to:

  • Protect participant privacy
  • Respect the value of patient-contributed data and materials
  • Support scientifically valid, responsible research
  • Ensure resources are used in ways that align with consent and approved purpose
  • Advance discoveries to improve outcomes for children with brain tumors

Questions About Data Security or Resource Access?

If you have questions about how CBTN protects participant data, biospecimens, models, imaging, or other research resources, please contact us at research@cbtn.org or submit a request through the CBTN research request form.