Important Information Before You Begin
Use this form to request substantive involvement from the National Registry Research Department, including scientific consultation, study design, feasibility assessment, data preparation or linkage, statistical analysis, interpretation, authorship, manuscript development, or grant collaboration. Project approval applies only to the specified work; any future analyses, secondary uses, linkages, or publications require new review and written approval. Requests limited to an existing data product or routine data extract may qualify for the separate Data Request Procedure.
National Registry Participation
By submitting this request, the requester acknowledges that the National Registry will serve as an active scientific collaborator. The scope of Registry involvement will be determined by project needs, available resources, and applicable agreements. National Registry participation may include, but is not limited to, consultation on study design; protocol or analysis‑plan refinement; feasibility assessment; customized data preparation or linkage; statistical analysis; interpretation of findings; development of abstracts, presentations, reports, or manuscripts; authorship; and grant support or funded collaboration. The requester agrees to work collaboratively with the National Registry throughout the applicable phases of the project and to provide timely responses, documentation, decisions, and other materials necessary to support project completion.
Data Privacy, Access, and Linkage
The National Registry will not provide directly identifiable individual-level data to external requesters or collaborators. Approved linkages with external datasets are performed by the National Registry or through a Registry‑authorized process. Collaborators may be required to submit data or linkage variables through a secure transfer mechanism. Linkage identifiers are removed from the final analytic dataset unless permitted by law, governing agreements, and Registry policy. Intellectual property ownership and use rights are addressed case-by-case in subsequent forms or agreements after a project is approved. National Registry data may not be redistributed, shared with unauthorized individuals, combined with other data for an unapproved purpose, or used outside the scope of the approved project.
Review of Public Products
The requester acknowledges that abstracts, presentations, posters, manuscripts, reports, grant materials, press releases, and other public-facing products may require National Registry review and approval before submission, presentation, publication, or release. This review is intended to confirm compliance with applicable agreements and confidentiality requirements, appropriate protection of National Registry data, accurate description of the data, methods, findings, and limitations, appropriate acknowledgment of National Registry staff contributions, and compliance with authorship and publication expectations. Adequate time must be provided for National Registry review. Materials should not be submitted, presented, published, or otherwise released until all required reviews have been completed.
Anticipated Project Timeline
Research collaborations with the National Registry typically require approximately one year from initial request to project completion, although timelines vary based on project complexity, data availability, linkage needs, regulatory review, staff capacity, analysis requirements, collaborators, funding, and publication processes. Submission of a request does not guarantee completion within a specific timeframe. Requesters should plan accordingly for grants, conferences, academic deadlines, contracts, and other time‑sensitive activities.
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