For internal candidates requesting data or images for a project originating within Wisconsin ADRC or WRAP, apply for resources using the UP Protocol Application for Resources.
The Wisconsin Alzheimer’s Disease Research Center (ADRC) is committed to sharing resources with internal and external investigators. Researchers can apply for the following resources:
- Human subjects data: Longitudinal clinical and cognitive measures, neuroimaging, biomarker assays
- Wisconsin ADRC participants and caregivers
- Stored biological samples: Plasma, serum, cerebrospinal fluid, brain tissue, whole blood
Visit our Research Services and Resources webpage to read about these resources.
Learn about data and samples from other centers and programs funded through the National Institute on Aging, including NACC, NCRAD, NIAGADS and SCAN.
The Wisconsin ADRC Executive Committee reviews resource requests for scientific merit and availability of requested resources. The executive committee meets the second Wednesday of each month; applications must be submitted no later than 2 weeks prior to the monthly meeting. The Wisconsin ADRC Executive Administrator ensures appropriate Wisconsin ADRC core leaders are present for the meeting in order to have a quorum for scientific review of each proposal. The executive committee follows NIH guidelines for grant review when reviewing all proposals.
A complete application includes an investigator biosketch, a summary of your research project, IRB or ethics committee approval, and specific details of the requested resource(s). We recommend investigators have a discussion about the proposed project with the applicable core liaison before submission to the executive committee, whenever possible. View a list of core leaders and co-leaders for contact information.
Prior to the executive committee review, Wisconsin ADRC staff will conduct a feasibility review. You may receive a request for additional documentation or follow-up questions during the feasibility review process.
A letter indicating the executive committee’s decision to support or not support the resource request will be emailed to the applicant 4 to 6 weeks from the date of the application. The executive committee does not provide a written evaluation of proposals.
If you have questions regarding the application or availability of requested resources prior to submitting the electronic application, contact ADRCrequest@medicine.wisc.edu.
Requests for Human Subjects Data
The Wisconsin ADRC provides limited data sets and/or de-identified data sets. De-identified data will not include visit dates and the age at visit will be provided instead. It is possible that some specific information may not be available for certain age groups. For example, the ADRC will not release specific age, ethnicity and city of residence for individuals over the age of 89, as this information could reveal a participant’s identity. Neuroimaging Informatics Technology Initiative (NIfTI) files for neuroimages will also be de-identified. For data requests originating outside of the University of Wisconsin, a Data Transfer Agreement will apply. Our institution uses the Federal Demonstration Partnership (FDP) templates.
Requests for Wisconsin ADRC Participants and Caregivers
Applications to recruit Wisconsin ADRC participants must include sufficient detail that should outline all participant touchpoints, interventions, procedures and/or drugs administered at each visit. IRB approval must be secured before any recruitment activities can be initiated.
Investigators recruiting Wisconsin ADRC participants must provide the Wisconsin ADRC with a copy of the IRB-approved study protocol, consent form(s), recruitment materials and a copy of the approval letter prior to the initiation of the study. We will provide you with a template recruitment letter and will review prior to distribution. Multi-year studies must send copies of continuing review approvals.
Please include language in your consent form that permits the future use of the data you collect (e.g., "Your data may be used by the research team now and in the future to answer questions about health concerns, memory, and thinking.").
For external investigators, initial correspondence with participants must originate from the Wisconsin ADRC. Names and contact information will not be released to any investigators who are not already on the Wisconsin ADRC protocol. External investigators may be asked to provide funding for administrative support to complete aforementioned mailings. The Wisconsin ADRC will mail the study recruitment letter, and participants can contact your study team directly.
Investigator orientation to recruitment of ADRC subjects
Before any recruitment with Wisconsin ADRC participants can begin, the study team must complete an orientation with the Wisconsin ADRC Outreach, Recruitment and Engagement Core Program Manager. To request an orientation, contact ADRCrequest@medicine.wisc.edu.
Stored Biological Samples
Investigators who request biological samples must provide documentation of IRB approval or exemption status. Samples will be anonymized and are only to be referred to by their specific identifiers. An agreement to share a limited data set may be required. Requests for data linked to participant samples should be made during the application process and will be reviewed by the executive committee. In order to fulfill requests most in line with investigators' aims, as much specificity as possible in neuropathological, demographic and clinical details is requested. Samples may only be utilized for the approved purposes. Unused samples are to be returned or destroyed as indicated in the resource request approval letter. Investigators are responsible for all costs related to shipping/delivery of the requested samples.
Information for approved resource requests
A letter is emailed to the investigator(s) of the proposed research indicating whether executive committee approval was granted, or not, as well as any steps that must be taken before resources will be released. In addition to specific requests from the committee, the investigator must provide:
- Signed ADRC Resource Use Agreement(s)
- Evidence of IRB approval or ethics committee/exemption status
- Material Transfer Agreement (if applicable)
- Data Transfer Use Agreement (if applicable)
Other post-review items:
- Distribution of resources and timeline
- Annual review of progress reports and expiration of approvals
Institutional Review Board review
All projects proposing to use Wisconsin ADRC resources must have approval or exemption status from an Institutional Review Board (IRB) or ethics committee before the resources will be released. An approval document must be provided to the Wisconsin ADRC.
In order for an IRB to consider a project exempt from review, data collection cannot be ongoing. Data collection for the Wisconsin ADRC’s Clinical Core is ongoing; however, if an investigator indicates that only data collected during a specified and past period will be requested, the project may still be categorized as exempt. See the Code of Federal Regulations, Part 46 for more details. Non-exempt status is determined by an IRB, not by the investigator.
Investigators whose requests for resources are approved must sign the ADRC Resource Use Agreement, requiring that investigator(s):
- Acknowledge the Wisconsin ADRC: Formally acknowledge the Wisconsin ADRC’s contribution to the research project (e.g., in the Acknowledgment section of a manuscript) and indicate the specific cores that provided support. For example, “The authors would like to acknowledge the clinical and neuropathology diagnostic support provided by the Wisconsin ADRC’s Clinical, Neuropathology and Biomarkers Cores, and bio statistical support provided by the Data Management and Statistical Core.”
- Report the Wisconsin ADRC grant number in publications: Include NIH-NIA grant number (P30-AG062715) in all publications (manuscripts and abstracts) and presentations related to work using Wisconsin ADRC resources.
- Obtain a PubMed Central ID (PMCID) number: For all publications resulting from work using Wisconsin ADRC resources, investigators must obtain a PMCID.
- Provide an annual progress and final report: Submit an annual progress report each year for 2 years after the resource request is fulfilled. When the study concludes, a final report is required. Progress reports not completed annually will be deemed expired. If project is renewed after the 2-year expiration, annual progress reports are still required.
Approved resource requests are valid for 2 years. Renewal of approved requests after the 2-year period is subject to executive committee review.
Annual review of progress reports and expiration of approvals
The executive committee reviews annual progress reports and reserves the right to rescind approval of previously approved requests. This is most likely to occur if the resources requested are severely limited in quantity.
Distribution of resources
Once all required documents are received by the Wisconsin ADRC, the investigator will coordinate with the Data Services Manager to transfer approved data through secured electronic methods.
Prior to the initiation of recruitment of Wisconsin ADRC participants, a planning meeting will be held with the Outreach, Recruitment and Engagement Core Program Manager to work out specific recruitment details. You will be asked to provide recruitment materials and consent documents for review.
Requests for samples will be filled once required documents and/or approvals are provided to the Wisconsin ADRC. Samples will be distributed based on the availability at the time all required documents are complete.
Timeline: External fulfillment of samples*
*Please note this timeline is an estimation
The Wisconsin ADRC follows the NIH Data Sharing Policy. Similarly, we ask that investigators using Wisconsin ADRC resources share data with the Wisconsin ADRC. For example, data collected directly from Clinical Core participants, or data derived from procedures performed with archived data or stored samples (e.g., genotype or assay findings), can be transferred to the Wisconsin ADRC Data Services Manager for inclusion in the ADRC data repository. For information about sharing data, contact ADRCrequest@medicine.wisc.edu.