Identifying the genes involved in Alzheimer’s disease and related dementias is of course no easy task. From among the thousands of gene candidates in the human genome, we need to determine which are involved in onset and progression, and which increase risk or offer protection.
Where can researchers find the biological specimens needed to unlock these mysteries?
I have the answer to that important question: The NIA-funded National Cell Repository for Alzheimer’s Disease, or NCRAD, a veritable treasure trove of biological material located at the Indiana University School of Medicine in Indianapolis.
Storehouse to the stars (of genetic research)
For nearly 25 years, the repository has been the go-to resource among researchers investigating the genetic underpinnings of dementia. Its original mission: to collect and store data and samples from a small number of Alzheimer’s disease families. (This article we published in 2007 describes the process that NCRAD uses with samples and date.)
Today, NCRAD houses samples and data from over 900 families with Alzheimer’s disease, and has expanded its scope to include many thousands of samples from people with sporadic Alzheimer’s disease, frontotemporal and other Alzheimer’s related dementias, as well as from older, cognitively healthy volunteers.
Having sent some 160,000 biological samples to over 120 investigators and labs across the world, NCRAD has fine-tuned the art of working closely with researchers to identify samples that meet specific research needs. In addition, they offer a platform for investigators interested in sharing samples with the wider research community.
NCRAD specimens are further enriched by clinical data collected on each volunteer. Depending on the sample set, this could include information about health histories, education, lifestyle choices, as well as data collected during neurological and physical exams.
Casting a wide net for samples, data
Collaboration from NIA-supported research programs and initiatives—including the Alzheimer’s Disease Centers (ADC), the Alzheimer’s Disease Neuroimaging Initiative (ADNI), the Alzheimer’s Disease Genetics Consortium, and the Alzheimer’s Disease Sequencing Project—has been key to building NCRAD’s wealth of sample and data.
NCRAD also runs a robust outreach program aimed at finding families across the country with memory problems or a diagnosis of Alzheimer’s or a related dementia. The repository sends —at no charge to volunteer research participants—blood sampling kits to bring to their doctor’s offices. In addition to the DNA collected from the blood samples and sent back to the repository, NCRAD collects and periodically updates each volunteer’s family and personal health histories.
- The NCRAD study continues to look for families with two or more living members with Alzheimer's disease or symptoms of serious memory loss. Approximately 700 participants have had an autopsy to confirm the presence or absence of AD. NCRAD offers participating families a brain-only autopsy to confirm, pathologically, the presence or absence of Alzheimer’s disease. Brain tissue will then be made available for research studies.
- The LOAD (Late Onset Alzheimer’s Disease) study is recruiting families with two or more living siblings diagnosed with Alzheimer's disease after the age of 60 and a third family member who has been either diagnosed with memory loss or Alzheimer's disease after the age of 50, or is older than age 60 and free of memory loss.
NCRAD also directs potential volunteers to an array of active studies on dementia, from international efforts involved in early-onset Alzheimer’s disease (DIAN study brochure, PDF 128KB), to older people free of cognitive symptoms (LOAD study brochure, PDF 39KB) and those with frontotemporal dementia (NIFD).
NCRAD wants to hear from YOU
This NIA-funded resource was created to help you and your fellow genetics researchers. In my opinion, it plays a vital role in helping us toward the key research goal set forth under the National Plan to Address Alzheimer’s Disease—to develop effective interventions to Alzheimer’s and related dementias by 2025. So, make that call to 1-800-526-2839 or email email@example.com to discuss with NCRAD staff how they might support your genetics research. And because NCRAD takes user satisfaction seriously, you can offer suggestions or feedback.