Step-by-Step Guide to NIA Data Access Program

NIA Data Access Program: $0 Secure Access to CMS-Linked Data in Days, Not Months

The NIA Data Access Program connects researchers with some of the most valuable aging and Alzheimer’s disease datasets available today. If you’re looking to access this resource, here’s what you need to know:

Quick Overview:

• What it is: A program linking NIA-funded study data with Centers for Medicare & Medicaid Services (CMS) data and other sources
• Who can access: NIA grantees (‘Studies’) linking their own data, or approved researchers (‘Researchers’) using existing linked datasets
• Key resources provided: Linked datasets, secure cloud-based enclave with free software (SAS, STATA, R, Python), and technical assistance
• Requirements: U.S.-based institution affiliation, IRB approval, Data Use Agreement, and physical access from within the United States
• Cost: No cost to approved researchers

The challenge facing aging and Alzheimer’s researchers is straightforward: rich datasets exist, but accessing and analyzing them securely has been expensive, time-consuming, and technically complex. The NIA Data Access Program, formerly known as the Medicare and Medicaid Resource Information Center (MedRIC), was established in 2021 specifically to address these barriers.

By linking longitudinal study data like the Health and Retirement Study (HRS) with its 20,000 participants to detailed CMS healthcare utilization records, the program creates uniquely powerful datasets. Researchers can now examine how health behaviors, interventions, and outcomes interact with real-world healthcare use, all within a secure, federally compliant environment.

The secure enclave eliminates the need to download sensitive data to local systems. Instead, you work directly in the cloud with pre-installed analytical tools, protecting personally identifiable information (PII) and private health information (PHI) while reducing infrastructure costs.

As Maria Chatzou Dunford, CEO of Lifebit, I’ve spent over 15 years working on computational biology and secure biomedical data platforms, including supporting federal health research initiatives that align closely with the NIA Data Access Program’s mission. This guide will walk you through exactly how to access these resources, step by step.

Understanding the NIA Data Access Program

Launched in 2021, the NIA Data Access Program solves a long-standing frustration for researchers: accessing valuable aging and Alzheimer’s datasets without navigating a maze of security, cost, and technical barriers. Formerly the Medicare and Medicaid Resource Information Center (MedRIC), the program’s mission is to connect researchers with high-value datasets by linking NIA-funded study data with Centers for Medicare & Medicaid Services (CMS) records and other sources. This creates richer datasets that can answer questions no single source could.

The program removes traditional barriers by providing three core resources: linked datasets combining study data with CMS records, a secure cloud-based enclave with pre-installed software, and technical assistance. Everything operates within strict federal data security requirements, protecting sensitive information while remaining accessible. Learn more on the NIA Data LINKAGE Program (LINKAGE) website.

Why Linked Health Data Matters

Data linkage is powerful because CMS data captures the real-world healthcare journey of millions—hospitalizations, doctor visits, prescriptions, and long-term care. When paired with longitudinal data like the Health and Retirement Study (HRS), which follows 20,000 Americans, researchers can trace how health behaviors impact costs, evaluate real-world interventions, and identify care disparities. For Alzheimer’s research, this means correlating clinical assessments with actual treatment patterns.

This linkage allows researchers to explore complex questions that were previously unanswerable. For example, a researcher could:

• Analyze Healthcare Utilization: Track the frequency of hospitalizations or emergency room visits for individuals with early-stage dementia compared to a control group.
• Evaluate Treatment Efficacy: Examine prescription drug data (Medicare Part D) to assess the real-world effectiveness and side effects of a new Alzheimer’s medication outside of a controlled clinical trial.
• Study Long-Term Care Transitions: Use nursing home assessment data to understand the factors that predict a transition from home-based care to residential care.
• Assess Economic Burden: Combine data on healthcare costs, prescription fills, and caregiving support to model the total economic impact of Alzheimer’s disease on patients and their families.

These linked datasets let you ask questions that individual data sources simply can’t answer, forming a foundation for research that can improve lives and inform policy.

Benefits of the Secure Enclave

The secure enclave is a key benefit of the NIA Data Access Program. It’s a fully equipped, no-cost research workstation in the cloud, designed to meet stringent federal security standards.

The enclave comes pre-loaded with essential analytical software: SAS, STATA, R, Python, and MS Office applications. This eliminates the need to purchase expensive licenses or manage complex installations. More importantly, the enclave is built on a foundation of robust security protocols that protect sensitive data. Personally identifiable information (PII) and private health information (PHI) never leave the secure environment. All analysis is done in place, which is a core principle of modern data security and a requirement for handling federal data.

This model provides several critical advantages:

• Compliance: The environment is compliant with the Federal Information Security Management Act (FISMA), a standard that can take institutions months or years to achieve on their own. This removes a significant administrative and technical burden from the researcher.
• Cost Savings: Building a comparable secure environment locally would require significant investment in hardware, security software, and specialized IT personnel to manage and audit the system. The NIA Data Access Program provides this entire infrastructure for free.
• Time Savings: The traditional process of acquiring CMS data and setting up a secure environment can take over a year. With the NIA program, approved researchers can often gain access and begin their analysis within days or weeks, dramatically accelerating the research timeline.
• Secure Collaboration: The enclave provides a centralized platform where research teams can collaborate securely without the risk of creating multiple, unsecured copies of sensitive data on local machines.

By removing these financial, technical, and administrative barriers, the NIA Data Access Program democratizes data access, allowing a broader range of researchers to contribute to our understanding of aging and Alzheimer’s disease.

How to Apply: Step-by-Step Walkthrough for the NIA Data Access Program

Accessing the NIA Data Access Program requires careful attention to detail to meet strict federal and ethical standards that protect participant privacy. The process is designed to ensure data security and responsible use for everyone involved. The application revolves around three key safeguards: Data Use Agreements (DUAs), Institutional Review Board (IRB) approval, and adherence to data privacy policies. Here’s a step-by-step walkthrough.

Eligibility: Are You a ‘Study’ or a ‘Researcher’?

First, determine your category. The NIA Data Access Program has two groups:

• A ‘Study’ is an NIA grantee with an active grant wanting to link their own study’s participant data with CMS records. For example, a university research center conducting a longitudinal study on cognitive aging could apply as a ‘Study’ to enrich its dataset with healthcare utilization data. Requirements include a U.S.-based institution affiliation, an active NIA grant, participant consent (or waiver) for CMS data linkage, and sufficient personal identifiers for matching. Studies must agree to share their newly linked datasets with other approved researchers.

• A ‘Researcher’ is an investigator who seeks to use existing linked datasets that are already part of the program (e.g., data from a participating ‘Study’). For instance, a postdoctoral fellow at a different institution could apply as a ‘Researcher’ to analyze the linked HRS-CMS dataset. Requirements include affiliation with a U.S.-based institution, physical access from within the United States (no overseas access), and written approval from the ‘Study’ whose data you plan to use.

The geographical restriction is a critical, non-negotiable security measure to protect the data.

Understanding Key Compliance Requirements

Before applying, it’s crucial to understand the core compliance components:

• Data Use Agreement (DUA): This is a legally binding contract between your institution, the NIA, and CMS. It outlines the terms and conditions for data use, including security protocols, confidentiality rules, and publication guidelines. By signing the DUA, you and your institution assume legal responsibility for protecting the data. A common pitfall is underestimating the time it takes for your institution’s legal or administrative office to review and sign the DUA, so start this process early.
• Institutional Review Board (IRB) Approval: You must obtain a letter from your institution’s IRB confirming that your research plan is approved or exempt. The IRB’s role is to ensure your project meets ethical standards and that your plan to use the sensitive data adequately protects participant privacy. Your research protocol must clearly describe how you will handle the data, who will have access, and how you will report findings without re-identifying individuals.
• CMS Data Cell Size Suppression Policy: This is a critical privacy rule you must follow. To prevent deductive re-identification of individuals, any data cell (e.g., in a table or chart) that contains a count of 1 to 10 participants must be suppressed or redacted from any publication or presentation. You cannot report findings based on very small groups. Your application must demonstrate that you understand and will adhere to this policy.

Application Process for ‘Studies’ (NIA Grantees)

For NIA grantees looking to link their data:

1. Initial Contact: Discuss your project with your NIA Program Officer or contact the LINKAGE team at support@linkagesupport.zendesk.com or 650-558-8310 to ensure your project is a good fit.
2. Complete DUA Package: Submit the DUA Request package, which includes the DUA Form for Studies, data sharing and project information forms, an IRB Letter/Waiver, and your institution’s data sharing principles.
3. Submit and Link: Email the complete package to support@linkagesupport.zendesk.com. Once approved, LINKAGE staff will guide you through the technical process of securely transferring your cohort data for linkage with CMS records and defining any necessary masking requirements.
4. Onboarding: After linkage is complete, you and your team will be onboarded to the LINKAGE Enclave. This includes receiving credentials, orientation on the enclave environment, and setting up your account to manage access for other ‘Researchers’ who will use your linked data.

Find all necessary forms and detailed guidance on the NIA’s Access or Share Data page.

Application Process for ‘Researchers’

For researchers wanting to access existing linked datasets:

1. Get Study Approval: Your first and most important step is to obtain written approval from a participating ‘Study’ to use its linked CMS data. This is mandatory and confirms that your proposed research aligns with the original study’s goals.
2. Complete DUA Package: Assemble your DUA Request package, including the DUA Form for Researchers, a Data Request Form, a Research Project Information Form, and an IRB Letter/Waiver. Ensure you use only institutional email addresses for all team members.
3. Submit for Review: Email the complete package and the ‘Study’ approval letter to support@linkagesupport.zendesk.com. The NIA Privacy Board will review your request to ensure it meets all scientific and privacy requirements.
4. Onboarding: Once approved, you and your team will be onboarded. This involves signing user agreements, receiving login credentials, and completing a brief orientation on how to use the secure enclave. Access is strictly restricted to within the United States.

For the popular HRS linked CMS data, use the specific RDA Application (CMS-HRS) form. Always ensure your research plan has IRB approval before you begin the application process.

Exploring the NIA Data Ecosystem

Beyond the core NIA Data Access Program (LINKAGE), the NIA supports a rich ecosystem of data resources to accelerate aging and Alzheimer’s research. These include data repositories, where researchers contribute findings, and data resources, where they access existing datasets. Understanding which resource fits your needs is key, as each serves a unique purpose. NIA’s commitment to data sharing enables scientists to build on each other’s work, changing our understanding of aging-related conditions.

Key NIA Data Repositories

Data repositories are curated collections where researchers deposit their findings for others to use. Key NIA-supported repositories include:

• National Alzheimer’s Coordinating Center (NACC) Data Platform: This platform centralizes longitudinal data from NIA’s Alzheimer’s Disease Research Centers (ADRCs). It includes standardized clinical data (Uniform Data Set or UDS), neuropathology data, and imaging, making it ideal for studying dementia progression and subtypes.
• AgingResearchBiobank: This resource provides access to biospecimens (e.g., DNA, plasma, tissue) and associated data from NIA-funded studies. It is essential for researchers needing to validate findings or test new hypotheses using physical biological samples.
• National Institute on Aging Genetics of Alzheimer’s Disease Data Storage (NIAGADS): As the primary genetics repository, NIAGADS houses large-scale genomic, transcriptomic, and other ‘omic’ data. It is the go-to resource for researchers conducting genome-wide association studies (GWAS) or seeking to identify genetic risk factors for AD.
• National Centralized Repository for Alzheimer’s Disease and Related Dementias (NCRAD): Funded since 1990, NCRAD banks and distributes biological samples (like DNA, CSF, and cell lines) linked to clinical information. It supports genetic and biomarker studies by providing high-quality materials to approved researchers.

Key NIA Data Resources for Accessing Datasets

These resources provide direct access to valuable, well-characterized datasets from major studies:

• National Archive of Computerized Data on Aging (NACDA): Housed at the University of Michigan, NACDA archives and disseminates a wide array of datasets focused on the social, behavioral, and health aspects of aging, supporting gerontological research.
• Primate Aging Database (PAD): A unique resource offering biological data from non-human primates, such as rhesus macaques. It allows for comparative studies of aging that are not possible in humans, particularly for examining brain aging.
• Baltimore Longitudinal Study of Aging (BLSA): As America’s longest-running scientific study of human aging (started in 1958), the BLSA provides deep longitudinal data on normative aging, allowing researchers to track changes over a person’s entire adult life.
• Health and Retirement Study (HRS) & Gateway to Global Aging Data: HRS is a large-scale survey of approximately 20,000 Americans over age 50, collecting rich data on health, economics, and social factors. The Gateway provides harmonized versions of HRS and its sister studies around the world.
• National Health and Aging Trends Study (NHATS): This study provides detailed information on a nationally representative sample of Medicare beneficiaries aged 65 and older, with a specific focus on disability, functioning, and late-life care needs.
• AD Knowledge Portal: Developed as part of the Accelerating Medicines Partnership for Alzheimer’s Disease (AMP-AD), this portal is a premier repository for multi-omic data (genomics, proteomics, etc.) and analytical tools, designed to accelerate target discovery and validation.
• Alzheimer’s Disease Neuroimaging Initiative (ADNI): A landmark public-private partnership, ADNI has been instrumental in validating biomarkers for AD clinical trials. It provides access to a rich dataset of clinical, imaging (MRI, PET), genetic, and biospecimen data from its participants.
• CRISPRbrain: An open-science data commons focused on functional genomics. It provides data from large-scale CRISPR screens in human brain cells, helping researchers link genetic variants to cellular functions relevant to diseases like Alzheimer’s.

For a comprehensive overview and links to these resources, visit the NIA’s Data Sharing Resources for Researchers page.

Navigating Data Sharing Policies and Past Challenges

The biomedical data landscape is constantly shifting. For researchers using the NIA Data Access Program, understanding policy changes and learning from past initiatives is essential for successful and compliant research.

The NIH Data Management and Sharing (DMS) Policy Explained

Effective January 2023, the NIH’s Final Policy for Data Management and Sharing fundamentally changed the landscape for NIH-funded research. The core requirement is that all funding applicants must submit a Data Management and Sharing Plan. This plan, typically limited to two pages, must prospectively outline how scientific data generated by their research will be managed and shared.

For NIA-supported research, this policy mandates data sharing, promotes data reuse, and fosters transparency and rigor. The plan must briefly address key elements:

• Data Type: Describe the scientific data to be preserved and shared, including the type and amount.
• Tools and Standards: Name the tools, software, and standards that will be used to analyze and access the data.
• Data Preservation and Access: Identify the repository where the data will be archived and explain how it will be findable and identifiable (e.g., via a persistent unique identifier).
• Access, Distribution, or Reuse Considerations: Describe any applicable factors that might affect access, such as privacy or intellectual property restrictions.

Using a resource like the NIA Data Access Program can directly support compliance with this policy. The program’s secure enclave, use of established data standards, and clear governance structure align perfectly with the DMS policy’s goals. Researchers can reference their use of the program within their DMS plans as evidence of responsible data management. Find details and guidance on the NIH Data Management and Sharing Policy page.

Lessons from Past Data Platform Initiatives

Learning from past initiatives is valuable. The NIA’s ambitious Real-World Data Platform project, designed to compile diverse real-world data for Alzheimer’s research, offers a key example. Despite a compelling vision and a planned $312 million investment, the project was not funded in April 2024. A Government Accountability Office (GAO) review highlighted significant challenges that serve as important lessons for the field.

The GAO found that the project lacked a comprehensive project management plan, had unreliable cost estimates, and did not establish clear roles and responsibilities for its partners. These management weaknesses prevented the project from moving forward.

What did NIA learn? Three critical insights emerged that reinforce the strengths of the current NIA Data Access Program:

1. Diverse Expertise and Formal Management Matter: Complex data projects require not just scientific expertise but also formal project management, financial oversight, and technical leadership.
2. Open Collaboration Requires Clear Governance: While collaboration is essential, it must be structured with clear agreements on roles, responsibilities, and decision-making processes from the outset.
3. Data Ownership and Costs Must Be Addressed Early: Critical questions about data ownership, access costs, and long-term sustainability must be resolved during the planning phase, not after the project is underway.

These lessons inform successful initiatives like the NIA Data Access Program, which embodies thoughtful planning and clear governance by providing a secure, no-cost enclave with robust technical support. This approach demonstrates that in the world of big biomedical data, solid planning and structured collaboration are foundational to success.

Frequently Asked Questions about the NIA Data Access Program

Let’s address some of the most common questions researchers have about accessing data through the NIA Data Access Program. These answers should help clarify key aspects of the program and guide your decision-making.

What is the main benefit of using the secure enclave?

The primary benefit is free access to a secure, cloud-based environment that is compliant with federal security standards (FISMA) and equipped with powerful analytical software like SAS, STATA, R, and Python. This single feature dramatically reduces the cost, time, and technical barriers that often prevent researchers from analyzing sensitive, linked datasets.

Think about it: you don’t need to purchase expensive software licenses, build your own multi-million dollar computing infrastructure, or hire specialized staff to navigate the complex process of achieving federal security accreditation. The enclave handles all of that for you. This allows you to focus entirely on your research questions rather than wrestling with infrastructure challenges, which is exactly how it should be.

Can I access NIA data from outside the United States?

For the NIA Data Access Program (LINKAGE), access is strictly limited to researchers who are physically located within the United States. You must also be affiliated with a U.S.-based institution. This geographical restriction is a non-negotiable aspect of the program’s security framework, designed to protect the sensitive personally identifiable information (PII) and private health information (PHI) contained in the linked datasets.

That said, other NIA data sharing repositories and resources may have different access policies. If you’re an international researcher interested in aging or Alzheimer’s research data, it’s worth checking the specific requirements for other NIA-supported platforms like the AD Knowledge Portal or NACC Data Platform. Each resource has its own governance structure and access rules, and some may be accessible to international collaborators.

Is there a cost to access data through the NIA Data Access Program?

No, and this is one of the most compelling aspects of the program. The NIA Data Access Program provides its three primary resources—linked datasets, the secure enclave with free software, and technical assistance—at absolutely no cost to approved researchers.

This no-cost model is intentional. The NIA recognized that high costs were a major barrier preventing many qualified researchers from conducting important aging and Alzheimer’s disease research. By eliminating financial obstacles, the program opens doors for smaller institutions, early-career researchers, and teams with limited grant funding to access world-class datasets and analytical tools. It’s about democratizing access to critical research resources and accelerating scientific findings across the field.

What specific types of CMS data are available through the program?

Approved researchers can gain access to a comprehensive suite of CMS administrative claims and assessment data files. The core files include:

• Master Beneficiary Summary File (MBSF): This foundational file contains demographic information, monthly enrollment status, and eligibility data for each beneficiary.
• Medicare Part A (Inpatient/Hospital): Provides detailed records for services covered under hospital insurance, including stays at inpatient hospitals, skilled nursing facilities (SNF), and hospice care.
• Medicare Part B (Outpatient/Carrier): Contains records for physician services, outpatient hospital care, medical equipment, and other medical services not covered by Part A.
• Medicare Part D (Prescription Drug Event): Includes detailed information on prescription drugs filled by beneficiaries enrolled in Part D.

In addition to these claims files, researchers can often access crucial assessment data, such as the Minimum Data Set (MDS) for nursing home residents and the Outcome and Assessment Information Set (OASIS) for home health care recipients. This rich combination of data allows for a holistic view of a participant’s healthcare journey.

Conclusion: Accelerate Your Research with Secure, No-Cost Data Access

The NIA Data Access Program is a fundamental shift in aging and Alzheimer’s research. By removing barriers of cost, complexity, and access, NIA provides a free pathway for researchers to work with some of the most valuable health datasets available.

You get linked CMS datasets, a secure cloud enclave with powerful tools (SAS, STATA, R, Python), and technical assistance—all at no cost. This is a game-changer for the scientific community.

The future of aging research relies on data sharing, as mandated by the NIH Data Management and Sharing Policy. By participating in the NIA Data Access Program, you join a movement toward open science. The detailed application process is vital for protecting privacy and ensuring security, but the reward is access to resources that can transform your research.

At Lifebit, we understand the power of secure, federated data platforms. Our mission aligns with the principles of the NIA program, enabling real-time, secure access to global biomedical data for biopharma, governments, and public health. The tools and data are available. The barriers are gone. Your next breakthrough in aging or Alzheimer’s research could be waiting in these datasets.

To learn more about how secure, real-time data analysis platforms are empowering federal health research initiatives, explore our insights on Empowering federal health research. The future of biomedical research is collaborative, secure, and accessible.