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Data sharing: The name of the game in Alzheimer's research

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NIA Blog Team

Thousands of gene candidates in the human genome have the potential to play a role in the onset and progression of Alzheimer’s disease. But you are just one scientist. How can you even start such an enormous task? This quest—one scientist analyzing thousands of gene candidates—can seem overwhelming.

You are not just one scientist. If we hope to find the cure for Alzheimer’s disease, we must break down the silos that inhibit collaboration and lead to duplication of efforts. It’s time to better connect as researchers; to share our data, discoveries, and even failed investigations that nevertheless provide valuable insights.

A treasure trove of specimens and data for genetics and other basic and clinical research

I want to share with you two great NIA-funded resources that collect and store biological specimens and data—and are available to you and the wider research community. The National Alzheimer’s Coordinating Center (NACC) and the National Cell Repository for Alzheimer’s Disease (NCRAD) can deliver de-identified biospecimens and cognitive data from study participants all over the country right to your lab door.

National Alzheimer’s Coordinating Center (NACC)

NACC facilitates and promotes collaborative research by collecting and storing data from the 29 NIA-supported Alzheimer’s Disease Centers (ADCs) across the country. NACC databases store data of all the people enrolled at the ADCs since the program’s development in 1984. That’s over 35 years’ worth of data from study participants all across the nation—an impossible volume of data to collect on your own.

All NACC data are de-identified and available at no cost, with no account or password required. Research scientists from the Coordinating Center will consult with you at no charge to ensure that you select data elements appropriate for, and tailored to, each of your specific research questions.

The NACC database is made up of three data sets. Consider how the following data sets might enrich your research:

  • The Uniform Data Set (UDS)—longitudinal data, collected annually, by means of a standardized clinical evaluation. Data include: demographic data, neuropsychological testing scores, clinical diagnosis, measures of frontotemporal lobar degeneration, structural MRI images, and APOE genotype (in some enrollees).
  • The Minimum Data Set (MDS)—Cross-sectional data collected retrospectively, on ADC study participants before the introduction of the UDS in 2005.
  • The Neuropathology Data Set (NP)—Standardized neuropathology data on people followed in the UDS and/or MDS who have died and undergone autopsy.

Go to the NACC website to submit your data request today!

National Cell Repository for Alzheimer’s Disease (NCRAD)

NCRAD provides resources to help researchers identify the genes that contribute to Alzheimer’s and other dementias. The NIH-funded repository collects and maintains biospecimens and associated data on study volunteers from a variety of sources, primarily people enrolled in NIA-supported ADCs, studies, and initiatives. Also housed there are DNA samples and data from the 900-plus families participating in the NCRAD Family Study—a study of families with multiple members affected by Alzheimer’s—as well as from the participants of more than 20 other studies nationwide.

NCRAD just celebrated its 25th anniversary and, to date, has sent nearly 200,000 biological samples to over 125 researchers around the world. Most recently, specimens from NCRAD and accompanying data have been utilized in genetic sequencing projects, resulting in the discovery of many new gene loci previously unknown to be related to Alzheimer’s disease. You, too, may want to access the biological materials NCRAD has to offer, including DNA, RNA, plasma, serum, CSF, cell lines, and brain tissue.

The biospecimens are enriched by clinical data collected on each volunteer. These data include health histories, education, lifestyle choices, as well as data collected during neurological and physical exams. With such a large number of people followed longitudinally, NCRAD data are a powerful resource for examining cognitive change over time.

Check out NCRAD’s biospecimen catalogs and request your custom data! Researchers can complete a web-based Data Agreement to obtain a username and password to request access to the restricted catalogs.