The NeuroHIV Data Ecosystem is designed to support rigorous, collaborative, and ethically grounded research by aligning with the FAIR, TRUST, and CARE principles. These frameworks guide our approach to data management, access, and governance, ensuring that our infrastructure meets the evolving needs of the scientific community while upholding social responsibility.
- FAIR Principles guide our efforts to make data Findable, Accessible, Interoperable, and Reusable, enhancing scientific discovery and collaboration across disciplines.
- TRUST Principles ensure that our data repositories are Transparent, Responsible, User-focused, Sustainable, and Technology-enabled, fostering confidence among data contributors and users.
- CARE Principles center the rights and interests of Indigenous and historically marginalized communities, emphasizing Collective Benefit, Authority to Control, Responsibility, and Ethics in data governance.
By operationalizing these principles, the NeuroHIV Data Ecosystem aims to accelerate discovery, promote reproducibility, and ensure that data practices are equitable and inclusive. We invite researchers to engage with our platform not only as users but as collaborators in shaping a more transparent and just data future.
Commitment to FAIR Data Principles
The NeuroHIV Data Ecosystem is grounded in the FAIR principles, ensuring that data are Findable, Accessible, Interoperable, and Reusable. These principles shape our data infrastructure, metadata standards, and sharing practices to support robust, reproducible, and collaborative research.
We recognize that aligning with FAIR is an ongoing process that requires transparency and community engagement. To that end, we provide a detailed breakdown of how the ecosystem meets each FAIR principle in the table below. This includes specific strategies, tools, and standards used to enhance data discoverability, accessibility, interoperability, and reusability across the research lifecycle.
By embedding FAIR principles into the design and governance of our ecosystem, we aim to maximize the scientific value of neuroHIV data and foster a culture of open, responsible data sharing.
By embedding FAIR principles into every layer of our ecosystem, we aim to accelerate discovery, foster collaboration, and ensure that neuroHIV data remain a durable and valuable resource for the global research community.
Findability | |
Principle | NeuroHIV Data Ecosystem Compliance Notes |
F1. (Meta)data are assigned a globally unique and persistent identifier | Each data record is assigned a globally unique and persistent identifier, ensuring traceability and long-term accessibility. Subjects receive unique identifiers appropriate to the mapped schema (e.g., NDAR GUID for NDA structures and USUBJID for CDISC domains). Dataset metadata incorporates external linkage identifiers and DOI references. Submissions are similarly assigned unique identifiers. |
F2. Data are described with rich metadata (defined by R1 below) | Metadata conform to the DataCite metadata schema, with additional properties for both the submission and the datasets to enhance richness for improved searchability. |
F3. Metadata clearly and explicitly include the identifier of the data they describe | Metadata explicitly includes the identifier of the associated data, maintaining a structured reference through a unique ID generated upon submission. |
F4. (Meta)data are registered or indexed in a searchable resource | Records are indexed to facilitate efficient discoverability for both internal queries and external search engines. Findability is also enhanced via the use of keyword metadata. |
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Accessible | |
Principle | NeuroHIV Data Ecosystem Compliance Notes |
A1. (Meta)data are retrievable by their identifier using a standardized communications protocol | Metadata and data are accessible through HTTPS, enabling retrieval via web browsers in accordance with standardized communication protocols. |
A1.1 The protocol is open, free, and universally implementable | HTTPS is an open, universally implementable protocol, ensuring broad accessibility and compliance. |
A1.2 The protocol allows for an authentication and authorization procedure, where necessary | Authentication and authorization mechanisms are in place for the restricted-access tier and the data upload feature. Public access requires no authentication, while the restricted-access tier and the data upload feature necessitate account creation and authorization before granting data/upload access. |
A2. Metadata are accessible, even when the data are no longer available | Metadata remains accessible even when the corresponding data requires authentication via the public tier. Additionally, metadata are associated with external linkage identifiers and DOI links, so all related data are discoverable across those services, even if not directly hosted via the neuroHIV Data Ecosystem. |
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Interoperable | |
Principle | NeuroHIV Data Ecosystem Compliance Notes |
I1. (Meta)data use a formal, accessible, shared, and broadly applicable language for knowledge representation. | Metadata are structured in accordance with the DataCite metadata schema, supporting formal, accessible, and widely applicable standards for knowledge representation. |
I2. (Meta)data use vocabularies that follow FAIR principles | The repository adheres to internationally recognized data standards, most notably CDISC structures. |
I3. (Meta)data include qualified references to other (meta)data | External linkages are supported to establish references to other metadata and datasets. |
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Reusable | |
Principle | NeuroHIV Data Ecosystem Compliance Notes |
R1. (Meta)data are richly described with a plurality of accurate and relevant attributes | In addition to the DataCite metadata properties, submitters have the option to provide a diverse range of additional properties. |
R1.1. (Meta)data are released with a clear and accessible data usage license | Data usage licenses are clearly defined and accessible. |
R1.2. (Meta)data are associated with detailed provenance | Detailed provenance information is recorded, including submission and modification timestamps and documented submitter details. |
R1.3. (Meta)data meet domain-relevant community standards | Compliance with domain-relevant community standards is maintained through adherence to internationally recognized frameworks such CDISC. |
Upholding TRUST Principles
The NeuroHIV Data Ecosystem is committed to building and maintaining a data infrastructure that is not only technically robust but also socially responsible and sustainable. To support this goal, we align our practices with the TRUST principles: Transparency, Responsibility, User Focus, Sustainability, and Technology.
These principles guide how we design, manage, and govern our data resources to ensure they are reliable, secure, and responsive to the needs of the research community. TRUST compliance fosters confidence among data contributors, curators, and users, and supports long-term stewardship of valuable neuroHIV data assets.
In the table below, we provide a detailed overview of how the ecosystem aligns with each of the TRUST principles, including specific policies, technologies, and governance strategies that support transparency, accountability, and user engagement.
By embedding TRUST into the foundation of our ecosystem, we aim to create a data environment that researchers can depend on—today and into the future.
Transparency | |
Principle | NeuroHIV Data Ecosystem Compliance Notes |
Terms of use, both for the repository and for the data holdings. | The NeuroHIV Data Ecosystem provides clear terms of use for both the repository and its data holdings. These include clear data use agreements and access conditions for controlled datasets. Ethical usage expectations are outlined to support transparency and compliance. |
Minimum digital preservation timeframe for the data holdings. | All data holdings, including harmonized datasets, mappings, and logs, are preserved for a minimum of 3 years, aligning with institutional and funding requirements for long-term accessibility and reproducibility. |
Any pertinent additional features or services, for example the capacity to responsibly steward sensitive data. | Sensitive data, particularly involving that of NeuroHIV Data Ecosystem individuals, are responsibly managed using de-identification, encryption, and tiered access controls. Access workflows include identity verification and audit logging. Metadata remains accessible, supporting transparency while maintaining privacy. |
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Responsibility | |
Principle | NeuroHIV Data Ecosystem Compliance Notes |
Adhering to the designated community’s metadata and curation standards, along with providing stewardship of the data holdings e.g., technical validation, documentation, quality control, authenticity protection, and long-term persistence. | NeuroHIV Data Ecosystem adheres to community-recognized metadata and curation practices. All data submissions undergo technical validation, quality control, detailed documentation, and version tracking, ensuring authenticity, integrity, and long-term usability. |
Providing data services, e.g., portal and machine interfaces, data download or server-side processing. | The platform offers web-based interfaces for data discovery, download, and server-side processing. Infrastructure built on AWS supports scalable and secure data access. |
Managing the intellectual property rights of data producers, the protection of sensitive information resources, and the security of the system and its content. | Contributor rights are protected through data use agreements. Sensitive data is safeguarded via AWS encryption, role-based access control - AWS IAM, and compliance with institutional governance policies. Audit trails and real-time monitoring via AWS CloudWatch supports system security. |
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User Focus | |
Principle | NeuroHIV Data Ecosystem Compliance Notes |
Implementing relevant data metrics and making these available to users. | The NeuroHIV Data Ecosystem provides metrics in the public tier, speaking to datasets, data types available to users. |
Providing (or contributing to) community catalogues to facilitate data discovery. | The platform links to any external data repositories that contain data related to ecosystem submissions, enhancing cross-platform data discoverability within the broader Neuro diversity research ecosystem. |
Monitoring and identifying evolving community expectations and responding as required to meet these changing needs. | The NeuroHIV Data Ecosystem team actively collects user feedback and tracks emerging trends to upgrade the platform's services. This ensures ongoing alignment with evolving community expectations and scientific priorities. |
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Sustainability | |
Principle | NeuroHIV Data Ecosystem Compliance Notes |
Planning sufficiently for risk mitigation, business continuity, disaster recovery, and succession. | Risk is managed through comprehensive business continuity planning, disaster recovery using AWS cloud infrastructure, and succession strategies to ensure uninterrupted service and data access. |
Securing funding to enable ongoing usage and to maintain the desirable properties of the data resources that the repository has been entrusted with preserving and disseminating. | Clear terms of use and responsible data management practices foster stakeholder trust and help secure continued funding to support project operations and resource sustainability. |
Providing governance for necessary long-term preservation of data so that data resources remain discoverable, accessible, and usable in the future. | The NeuroHIV Data Ecosystem commits to maintaining data accessibility, discoverability, and usability for at least 3 years, using standardized preservation practices and secure, access-controlled workflows for sensitive data. |
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Technology | |
Principle | NeuroHIV Data Ecosystem Compliance Notes |
Implementing relevant and appropriate standards, tools, and technologies for data management and curation. | The NeuroHIV Data Ecosystem employs AWS services such as S3 (data storage), Lambda (serverless pipelines), IAM (access control), and CloudWatch (monitoring) to manage data efficiently and securely. Drupal serves as the user-facing portal for accessing reports, including access control for restricted tier data. |
Having plans and mechanisms in place to prevent, detect, and respond to cyber or physical security threats. | System security is reinforced through encryption, role-based permissions, real-time activity monitoring, and access auditing using AWS tools. Controlled data access is tightly managed through Drupal and AWS IAM, ensuring compliance with security best practices. |
Centering Equity and Ethics: Commitment to CARE Principles
The NeuroHIV Data Ecosystem is committed to advancing data practices that are not only scientifically rigorous but also socially just. We align our governance and stewardship with the CARE principles: Collective Benefit, Authority to Control, Responsibility, and Ethics, to ensure that data use respects the rights, interests, and values of the communities represented in our research.
These principles are especially important when working with data involving Indigenous Peoples and historically marginalized populations. CARE emphasizes that data are not just technical assets but are deeply connected to people, cultures, and histories. Our approach to CARE is grounded in meaningful engagement, transparent governance, and a commitment to equity in data access, use, and benefit-sharing.
In the table below, we provide a detailed overview of how the NeuroHIV Data Ecosystem aligns with each of the CARE principles. This includes specific policies, practices, and safeguards we have implemented to promote ethical, inclusive, and community-centered data stewardship.
Collective Benefit | |
Principle | NeuroHIV Data Ecosystem Compliance Notes |
C1. For inclusive development and innovation | The neuroHIV Data Ecosystem is intended to serve all research communities equally. Researchers from any community may use data housed in the ecosystem provided they adhere to the terms of User Agreements and receive appropriate approvals for access (as applicable). |
C2. For improved governance and citizen engagement | The neuroHIV Data Ecosystem will house data submitted by researchers within the neuroHIV field. There are no restrictions preventing the use of data housed within the ecosystem that would prevent the use of data to enrich the planning, implementation, and evaluation processes that support Indigenous populations. |
C3. For equitable outcomes | Data made available through the neuroHIV Data Ecosystem are intended to benefit all, including Indigenous populations. |
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Authority to Control | |
Principle | NeuroHIV Data Ecosystem Compliance Notes |
A1. Recognizing rights and interests | Data to be housed within the neuroHIV Data Ecosystem are expected to avoid any violation of pertinent consents. |
A2. Data for governance | Indigenous populations are free to utilize the neuroHIV Data Ecosystem, through the same access and approval workflows applicable to all users equally. |
A3. Governance of data | The neuroHIV Data Ecosystem welcomes feedback from any Indigenous communities. |
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Responsibility | |
Principle | NeuroHIV Data Ecosystem Compliance Notes |
R1. For positive relationships | The neuroHIV Data Ecosystem looks forward to creating and maintaining relationships based on respect, reciprocity, trust, and mutual understanding for any Indigenous population data housed within the Ecosystem. |
R2. For expanding capability and capacity | The neuroHIV Data Ecosystem welcomes feedback from Indigenous populations and intends to enhance data literacy as much as possible for all populations. |
R3. For indigenous languages and worldviews | The neuroHIV Data Ecosystem will include detailed metadata, implement ethical data practices respecting Indigenous data sovereignty, and focus on capacity building through the training resources to be provided via the ecosystem. Additionally, the data ecosystem will design user-friendly interfaces to ensure accessibility. These strategies collectively support the inclusion of Indigenous perspectives and values, fostering a repository that reflects Indigenous worldviews. |
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Ethics | |
Principle | NeuroHIV Data Ecosystem Compliance Notes |
E1. For minimizing harm and maximizing benefit | The neuroHIV Data Ecosystem has no intent of making available any data that stigmatize or portray Indigenous Peoples, cultures, or knowledges in terms of deficit. Should any Indigenous population identify any such concern, the neuroHIV Data Ecosystem welcomes engagement from Indigenous communities. |
E2. For justice | The neuroHIV Data Ecosystem has no intent of making available any data that would adversely affect imbalances in power, resources, or Indigenous rights. Should any Indigenous population identify any such concern, the neuroHIV Data Ecosystem welcomes engagement from Indigenous communities. |
E3. For future use | The neuroHIV Data Ecosystem will remain mindful of and adherent to the terms of future use defined in informed consent for all communities. |