Observational Study Data Request Terms and Instructions
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We follow the principles of Productivity (with Recognition of the investigator who develops a research idea and does the work to publish it), Transparency, Fairness, and Inclusiveness. The following policies regarding access to DIAN data are intended to provide structure to the request process, respect for intellectual contributions, and standards regarding security/confidentiality.
All requests for data must be submitted in writing via the electronic data request form available on this website. The request form will include investigator affiliation, contact information, funding support, institutional review board (IRB) approval (if applicable), an NIH-style biosketch, and a brief description of the project, including specific aims, study design, characteristics of the data requested and analysis plans. Investigators requesting data also will be required to sign a data user agreement and an acknowledgement agreement, as specified below. Applications for data use will be reviewed by the Principle Investigator and relevant DIAN Core Leaders. The number, type and disposition of the requests will be tracked by the DIAN Administration Core and a data sharing report will be generated for progress and final reports to the National Institute on Aging (NIA). Each data request will specify the data elements required for the planned analyses. The Biostatistics Core personnel will prepare a file containing only these data elements, together with a participant identification number (not the DIAN ID# but identifier recoded to protect confidentiality) so that questions about particular individuals can be resolved without the investigator’s knowledge of the participant’s identity. Image data will be available to approved investigators in raw and post-processed formats via the DIAN Central Neuroimaging Data Archive (CNDA) after a formal Data Use Agreement (DUA) has been signed by both institutions.
Terms & Obligations of Resource Usage
Acceptance of DIAN resources obligates the recipient to cite/reference the grant (Dominantly Inherited Alzheimer Network, U19AG032438) in any presentation or publication that may result from this research.
Should publications result from the use of DIAN resources now or in the future, the recipient agrees to notify the DIAN Executive Director with details (reference or PubMedCentral ID#) and provide a copy of the publication so productivity derived from our resources can be reported to the funding agency (the National Institute on Aging (NIA)). Such publications require compliance with NIH public access policies and DIAN data sharing/publication policies.
Should funding result from this research now or in the future, please notify the DIAN Executive Director with details (grant title, sponsor, number, dollar total, dates) so productivity derived from our resources can be reported to NIA.
No sharing of data with a third party is allowed without permission of the DIAN Steering Committee.
De-identified DIAN data will be made available to investigators to conduct analyses after approval by the PI and the relevant DIAN Core Leader
The Deputy Director of DIAN (ie., Administrative Core) will review the request and determine the relevant Cores that are required for review the proposal. Then the application will be sent to those Core Leaders and the Principal Investigator to review and approve or deny the request. When Core Leaders do not reach consensus about the request or agree not to approve, further review by the Steering Committee may be necessary. To avoid overlapping effort, investigators are be encouraged to use the search option on the DIAN request website to see what other requests might be similar to theirs.
Criteria for review
Data requests will be reviewed based on the following criteria:
- Scientific merit and feasibility (e.g. availability of DIAN resources to fulfill the request)
- Appropriateness of the investigator’s qualifications and resources to protect the data.
- Appropriateness to DIAN goals/themes
Priority of access and review/approval process
To respect intellectual contributions of DIAN investigators and collaborators, the following system has been adopted.
- DIAN-affiliated requests: Data analyses to support manuscripts can be developed and proposed by anyone in DIAN: Core Leaders, Site Leaders, other Steering Committee members, or any student, fellow, or investigator designated by a DIAN Site Leader. All data requests will be reviewed by the relevant Core Leaders and the Principal Investigator of DIAN. Upon approval, these requests will receive the most recent data freeze modules.
- External requests: For requests from those not affiliated with the DIAN study, upon approval, access to the previous data freeze will be granted. Such projects/manuscripts will follow the “DIAN-affiliated request” review and approval process (see next section). Publications by investigators outside DIAN would list the DIAN Study Group in the acknowledgments with the required paragraph at the end of this document.
Suggested timeline for resource requests
- Allow 30-60 days for the review process (data only)
- Allow 60-90 days for tissue requests (require external review)
- Allow 30 days for interaction with the Biostatistics Core to provide dataset.