FAQs
This page presents responses to some of the frequently asked questions (FAQs) posed by HEAL Investigators, including links to relevant resources. These FAQs will be periodically updated as the HEAL Data Ecosystem evolves.
General Questions
How can I fulfill NIH genomic data sharing requirements?
For genomic data collected under HEAL, the NIH Genomic Data Sharing Policy applies. For more details, please find the policy here: Genomic Data Sharing Policy. The full-text of the policy can be found here: NOT-OD-14-124: NIH Genomic Data Sharing Policy.
Are there any recommended repositories for sharing HEAL study data?
Investigators must consider domain-specific repositories recommended by the funding Institute/Center/Office as their first choice. If there is no award-specific guidance or domain-specific repositories, investigators can review our principles for repository selection and take a short quiz to find which of our currently recommended repositories might be most relevant for their study’s data.
If your data is sensitive or requires specific security needs not supported by the available repositories, please contact the HEAL Stewards.
Are there any minimum data quality standards for sharing data?
Data and metadata quality expectations differ by repository and research data type. HEAL Investigators should plan to adhere to requirements of the repository where they will submit data, and data standards and norms prevailing in their field of research.
Are HEAL studies expected to use Common Data Elements (CDEs)?
To facilitate cross-study comparisons and improve the interpretability of findings, the NIH HEAL Initiative’s Common Data Elements (CDE) Program identified questionnaires for use when studying nine core pain domains. New clinical pain studies are required to submit their case-report forms or questionnaires to the CDE Program for potential inclusion as supplemental CDEs.
The NIH National Library of Medicine also offers the Common Data Elements (CDE) Repository designed to provide access to structured human and machine-readable definitions of data elements that have been recommended or required by NIH Institutes and Centers and other organizations for use in research and for other purposes.
How should I acknowledge HEAL funded research in publications?
NIH policy requires acknowledging federal funding when describing projects or programs supported in whole or in part with NIH funds.
Example: "Research reported in this [publication/press release] was supported by [Helping to End Addiction Long--term® Initiative, or NIH HEAL Initiative®] under award number [enter specific NIH award number(s) in the format appropriate to the award type. For instance, grant numbers are formatted as R01NS123456]."
Is there guidance on sharing qualitative data generated by HEAL studies?
Qualitative data should be appropriately de-identified before sharing. De-identifying qualitative data can be especially challenging. Resources to assist with understanding challenges and solutions include:
- Social Science Research Council’s interactive online course Managing Qualitative Social Science Data
- Mannheimer et al. (2019)
Repositories specializing in qualitative data, such as ICPSR and QDR, can provide relevant guidance as well.
Are there tools to adopt FAIR practices?
There are many tools developed by the community that allow adoption of best practices to make data FAIR. Some of them are:
- DMP Tool to create data management plans that meet institutional and funder requirements
- Research Data Alliances – 23 Things: Libraries for Research Data
- Research Data Management resources funded by UKRI
- FAIR Data Maturity Model
- FAIR-DOM, a Consortium of Services for Research Data Management and More
- GO-FAIR Resources
- RDMkit, an ELIXIR Europe resource
- FAIR Evaluator services
- Machine Actionable Policy Templates
Will the HEAL data sharing requirements compromise participant and/or patient privacy?
No. HEAL investigators should select repositories with appropriate levels of control to not compromise participant/patient privacy.
Who do I contact to clarify the data sharing expectations of my award?
Contact your Program Officer if you are unsure of the data sharing expectations of the award.
For all other questions, please submit your questions to the HEAL Stewards.
What does it mean to register my study and what information is required for registration?
Registering your study on the Platform involves providing details about your HEAL study. For more information on what information is required for registration, navigate to Step 3 on the Platform Registration documentation page. Study registration will enable more robust search functions, make your study more findable, and link your study to other HEAL studies on the Platform.
My study produces complex data formats (such as imaging, physiological, genomic, or proteomic data) that require specialized repositories to store and index properly. Can the HEAL Data Ecosystem support such data?
The HEAL Stewards have identified and approved multiple repositories for genomic, imaging, and physiological data, including dbGaP, Sequence Read Archive (SRA), NIMH Data Archive (NDA), OpenNEURO, and SPARC and are considering additional repositories. For help selecting the most appropriate repository, please contact the HEAL Stewards here. Regardless of data types, provide your study-level metadata (SLMD) by completing the CEDAR SLMD form, and provide variable-level metadata (VLMD) as a data dictionary through the HEAL Platform’s VLMD submission system or by emailing it to the HEAL Stewards.
How do I link datasets for data types in the same study that go to different repositories, like human metabolomics and whole-genome sequencing data?
When submitting data to multiple repositories, register each dataset on the HEAL Platform. This will require the name of each repository and the repository-generated study ID for that dataset. Each study can register as many repositories and repository-specific study IDs as necessary. For assistance, contact the HEAL Platform team or the HEAL Stewards.