Data Archiving Permissions for JHD Authors
Responsible data sharing strengthens reproducibility and accelerates hereditary disease research progress.
Archiving Standards for Hereditary Disease Data
JHD supports transparent, ethical data sharing with appropriate patient protections.
Authors are encouraged to archive datasets, analysis code, and supporting documentation in recognized repositories whenever feasible. Data archiving improves reproducibility, supports external validation, and allows other teams to build on published hereditary disease findings.
Each manuscript must include a data availability statement that explains where data can be accessed, under what conditions, and how reuse requests are handled. If data sharing is limited by consent or law, provide a clear explanation and access pathway for qualified researchers.
Selecting Appropriate Archiving Platforms
Repository choice should support persistence, metadata quality, and access governance.
Trusted Repositories
Use domain or institutional repositories with stable governance and archival intent.
Persistent IDs
Assign dataset identifiers such as DOI or accession numbers for citation stability.
Controlled Access
For sensitive records, use managed access models with review procedures.
Metadata Depth
Provide variable definitions, file descriptions, and protocol context for reuse.
When selecting a repository, confirm retention policy, access controls, and citation support. Avoid temporary file-sharing platforms that do not provide long term retrieval guarantees.
Data dictionaries and readme files are required for complex datasets. These documents should explain coding schemes, units, and preprocessing steps in clear language.
Handling Family and Genomic Data Safely
Inherited disease datasets may contain sensitive information requiring enhanced controls.
For patient and family-linked data, remove direct identifiers and evaluate re-identification risk before release. If full open sharing is not permissible, deposit de-identified metadata and provide a controlled request process.
Consent language must align with the intended sharing model. If original consent limits secondary use, specify those limits in the data statement and describe alternative access options such as mediated data enclaves.
Authors remain responsible for obtaining permissions for third-party datasets integrated into the study. Permission terms should be documented and compatible with publication disclosures.
What JHD Expects in Data Availability Sections
Concise, specific statements reduce review delays and improve reuse confidence.
Location
Provide repository name, persistent link, and accession or DOI identifier.
Conditions
State whether access is open, embargoed, or controlled with governance criteria.
Documentation
Reference codebooks, protocols, and scripts needed for interpretation.
Versioning
Indicate dataset version used in the manuscript and update path for revisions.
Example statement format: "Sequencing data are available in [repository] under accession [ID]; controlled access requests are reviewed by [governance body]."
Clear statements improve editorial assessment and make published hereditary disease research easier to evaluate and reproduce.
Good Data Availability Statements
Clear statements reduce reviewer uncertainty and improve reuse potential.
Example open model: "Variant call files and analysis scripts are available at [repository] with DOI [identifier]." Example controlled model: "De-identified family data are available upon request subject to institutional approval and data use agreement." These formats help readers understand access pathways immediately.
When access is restricted, provide realistic request turnaround expectations and governing contact details.
Common Archiving Mistakes to Avoid
Prevent frequent issues that slow review or limit dataset usability.
Missing Identifiers
Always provide DOI or accession references in the manuscript body.
Unclear Access Terms
State whether access is open, embargoed, or controlled with explicit rules.
Poor Documentation
Include codebooks and workflow notes for interpretable secondary analysis.
No Version Tracking
Record dataset version used for publication and update history when revised.
Long-Term Data Stewardship
Preservation planning protects hereditary evidence quality over time.
Maintain archived datasets and documentation for a meaningful post-publication period, and update identifiers when versions change. Stable stewardship improves reproducibility and secondary research confidence.
Define Request Path for Controlled Data
Readers should know exactly how to request restricted datasets.
Include governance contact details, review criteria, and expected response windows in controlled-access statements.
Archive Metadata Matters
Descriptive metadata increases practical reuse.
Include concise dataset summaries so secondary users can assess relevance without downloading full files first.
Archive Data With Confidence
Follow JHD guidance to balance transparency, privacy, and scientific reuse in hereditary disease studies.
For support: [email protected]
