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Data & Sample Sharing

Alzheimer's Prevention Initiative (API) Trial Data and Sample Sharing
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Data & Sample Sharing
It is important to share data that cannot be readily replicated. We believe data should be made as widely and freely available as possible while safeguarding the privacy of participants and protecting confidential and proprietary data.

In 2012, API established a precedent-setting agreement with Genentech and its parent organization, Roche, to share data and biological samples from the API ADAD Colombia Trial.

API subsequently established similar data and biological sample-sharing agreements with Novartis and Amgen for the Generation Program.

In 2016, API researchers, along with their colleagues from the Collaboration for Alzheimer’s Prevention (CAP), developed data and sample sharing principles to ensure trials can be performed in ways that will have the greatest public benefit. API intends to embrace these principles in all its trials.

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Data Access Request Process

To facilitate data sharing, Researchers can submit a Data Access Request to gain access to data and samples from API Trials. Screening and longitudinal data, neuroimaging data, and biospecimens are available to request through API’s partnered sharing platforms and repositories. For more detail on data and samples available for each trial, please see the study specific pages.

Here's how it works:
1. Select Data
Review the data available for request to ensure our data is a good fit for your research question. Please see the study specific pages and/or the study methods papers for more detail.
1. Select Data
2. REQUEST
Submit a Data Access Request via the selected platform/repository. Requests should include contact information, funding support for the project (if any), and a description of the proposed project.
2. REQUEST
3. REVIEW
Your request will be reviewed by the Independent Review Panel for scientific merit, feasibility, specificity, and design. API’s Data Management Team will process your request and email you with any questions and updates on your request.
3. REVIEW
4. AGREEMENT
Requestor must sign a Data Transfer and Use Agreement (DTUA), which includes appropriate use guidelines for data along with publication guidelines and requirements. Please familiarize yourself with the guidelines specific to the data being requested by reviewing the overview document on our Resources page.
4. AGREEMENT
5. ACCESS
Requestor will be given access to data on requested platform to perform the requested analyses. Please inform API of intent to publish results by emailing our API Data Team
5. ACCESS

Sample Access Request Process

API shares biospecimens from its trials through the Indiana University National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD). For more information including full request process, catalog access, and pricing structures, please visit NCRAD’s Request Sample page.

Here's how it works:
1. Select Samples
Review available samples in NCRAD’s catalog to ensure samples available fit your research needs.
1. Select Samples
2. REQUEST
Submit a Sample Access Request to NCRAD’s Biospecimen Review Committee (BRC). Please review submission requirements here.
2. REQUEST
3. REVIEW
Your request will be reviewed by NCRAD’s BRC and API’s Independent Review Panel for scientific merit, feasibility, specificity, and design. Please see NCRAD’s BRC review cycles for approximate timing of review.
3. REVIEW

Questions?

Contact the API Data Sharing Team

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