Accessing Biospecimens and Data

In order to ensure that researchers have the most accurate information, the National Cell Repository for Alzheimer’s Disease (NCRAD) is continually updated with new information. At the time data is requested, NCRAD will provide the researcher with the most current information. Therefore, NCRAD encourages all researchers to request an updated set of variables prior to publication and implementation of analyses involving samples acquired from the Repository. While every effort is made to verify all data and information, NCRAD cannot be responsible for any errors or omissions in the distributed data.

Cohort Population Genomic DNA Cell Line DNA RNA Plasma Serum LCLs PBMCs CSF
ADNI AD Cases, Controls, MCI
AA Genetics AD Cases, Controls
ADCs AD and other dementia cases, Controls, MCI
DIAN Early Onset AD Families with known mutations
GEMS Dementia prevention
GIFT AD, FTD, Controls
Indianapolis-Ibadan Elderly African Americans from Indianapolis, Yoruba living in Ibadan
NCRAD Family AD and other dementia families
NIA-LOAD Late Onset AD Families, Controls
ARTFL FTLD syndrome cases and healthly family members
LEFFTDS FTLD family study with known genetic mutations (symtomatic and asymtomatic family members)

ADNI

The longitudinal Alzheimer’s Disease Neuroimaging Initiative (ADNI) is a longitudinal multi-center study that began in 2005 and is now in its third phase. ADNI has been validating the use of biomarkers including blood tests, tests of cerebrospinal fluid, and MRI/PET imaging for Alzheimer’s disease (AD) clinical trials and diagnosis.

Study Subjects

150 elderly controls, 450 subjects with mild cognitive impairment, 150 with mild to moderate AD and a group of 100 subjects with significant, yet subtle, memory complaints, referred to as the significant memory concern cohort.

Available Data

ADNI maintains an unprecedented data access policy intended to encourage new investigation and to increase the pace of discovery in the race to prevent, treat, and one day cure AD. All data is made available without embargo. Armed with better knowledge of the first indications of AD from ADNI and other studies, researchers are beginning to test potential therapies at the earliest stages feasible when there may be the greatest promise for slowing down progression of this devastating disease. Scientists and researchers seeking access to ADNI data should visit USC’s Laboratory of Neuroimaging ADNI database (ADNI LONI).

Available Biospecimens

Genomic DNA, Cell Line DNA, Lymphoblastoid Cell Lines (LCLs) and RNA from blood are available for request from NCRAD.

AA Genetics

The African American Alzheimer’s Disease Genetics study (AA AD Genetics) is a multi-center, cross-sectional study that was established to examine genetic risk factors for Alzheimer’s disease among African Americans. The focus of the study was to provide a carefully refined phenotype, including neuropsychological test performance, cardiovascular health, and brain imaging data, for genetic association studies of AD among African Americans.

Study Subjects

The goal of the AA Genetics study was to recruit a total of 2,000 African Americans age 60 or older. Sites recruited both cases and controls, primarily from community sources and not memory clinics.

Available Data

The database includes item-level data from medical, functional, and neuropsychological evaluations, as well as diagnostic information. There is a subset of participants with structural MRI data. A fixed minimal dataset is available through the NCRAD catalog. An additional full dataset can be requested from Columbia University.

Available Biospecimens

Cell Line DNA, Lymphoblastoid Cell Lines (LCLs)

ADCs

The Alzheimer’s Disease Centers (ADCs) are funded at major medical institutions across the United States. Researchers at these Centers are working to translate research advances into improved diagnosis and care for people with Alzheimer’s disease while focusing on the program's long-term goal—finding a way to cure and possibly prevent Alzheimer’s.

Study Subjects

Although each center has its own area of emphasis, a common goal of the ADCs is to enhance research on Alzheimer’s disease by creating a network that shares new ideas and research results. The clinic-based population includes subjects with Alzheimer’s disease and related disorders, as well as cognitively normal subjects and those with MCI.

Available Data

The National Alzheimer’s Coordinating Center (NACC) maintains a cumulative database including clinical evaluations, neuropathology data when available, and MRI Imaging. The NACC database comprises several standardized clinical and neuropathology data sets, all of which are freely available to the research community.

Available Biospecimens

Genomic DNA from blood or brain tissue, Cell Line DNA from LCLs, PBMCs from select subjects

DIAN

The Dominantly Inherited Alzheimer’s Network (DIAN) is an international research partnership of leading scientists determined to understand a rare form of Alzheimer’s disease that is caused by an autosomal dominant gene mutation. Understanding this form of Alzheimer’s disease may provide clues to decoding other dementias and developing dementia treatments.

Study Subjects

Currently enrolling study participants who are biological adult children of a parent with a mutated gene (PS1, PS2, APP) known to cause dominantly inherited Alzheimer’s disease. Such individuals may or may not carry the gene themselves and may or may not have disease symptoms. This international, multi-center longitudinal study is aiming to recruit 600 individuals: 300 expected to be gene carriers who will develop AD and 300 non-demented controls (siblings).

Available Data

Participants are evaluated in a uniform manner at entry and longitudinally thereafter with instruments to include: the clinical and cognitive batteries that comprise the Uniform Data Set (UDS) and additional DIAN-specific testing. A full description is available on the DIAN website.

Available Biospecimens

Cell Line DNA, Lymphoblastoid Cell Lines (LCLs)

GEMS

The Ginkgo Evaluation of Memory Study (GEMS) is a primary prevention trial of EGb 761 120 mg twice daily versus placebo. The primary study outcome was incident dementia, with secondary outcomes of cardiovascular disease/mortality, physical function, and cognitive change/progression as related to study drug. The study formulation and dose of Ginkgo biloba was not effective in reducing incident dementia.

Study Subjects

Between October 2000 and May 2002, 3069 non-demented subjects ages >=75 years were screened and randomized to drug or placebo at four field centers; University of Pittsburgh, Pittsburgh PA, Wake Forest University, Winston-Salem and Greensboro NC, University of California Davis, Sacramento CA, and Johns Hopkins University, Hagerstown MD. Subjects were community dwelling volunteers. Subjects underwent detailed baseline and annual cognitive testing, and those with abnormal testing underwent a neurological exam and MRI. Subjects with an incident dementia diagnosis discontinued participation and were referred for treatment. Cognitive status was known for 93.6% of all trial participants. Retention in the trial was very high (195 withdrawals, 379 deaths).

Available Data

Data collection was longitudinal until subjects reached the incident dementia endpoint, or the end of the trial. Median follow up from entry to final visit was 6.1 years. The detailed cognitive testing battery was administered at baseline and then annually beginning in 2003, with semi-annual administration of the 3MSE and CDR. A minimal dataset is available through NCRAD to approved users. The full dataset is available upon request from the GEMS Executive Committee.

Available Biospecimens

Genomic DNA, Plasma, Serum

GIFT

The Genetic Investigation in Frontotemporal Dementia and Alzheimer's disease (GIFT) study is aimed at identifying novel genes causing or altering susceptibility to Frontotemporal Dementia (FTD) and Alzheimer's disease (AD), by re-sequencing a panel of genes involved in tau metabolism in a large series of well-characterized patients with AD and FTD and controls enrolled in 6 major centers in California and Georgia.

Study Subjects

The GIFT network includes 5 centers in California (University of California at Los Angeles, San Francisco, Davis, Irvine, University of Southern California) and Emory University. Clinical data from patients enrolled at each Center are collected at the National Alzheimer's Coordinating Center (NACC) and DNA and cell lines have been collected at the National Cell Repository for Alzheimer's Disease (NCRAD).

Available Data

The National Alzheimer’s Coordinating Center (NACC) maintains a cumulative database including clinical evaluations, neuropathology data when available, and MRI Imaging. The NACC database comprises several standardized clinical and neuropathology data sets, all of which are freely available to the research community.

A first set of genetic data has been deposited within the National Institute on Aging Genetics of Alzheimer's Disease Data Storage Site (NIAGADS) and a DNA methylation dataset including a subset of GIFT study participants is available in the Gene Expression Omnibus (GEO).

Available Biospecimens

Genomic DNA, Cell Line DNA, Lymphoblastoid Cell Lines (LCLs)

Indianapolis-Ibadan

Established in 1991 as a longitudinal, prospective, population-based, comparative epidemiological study of the prevalence, incidence rates, and risk factors for Alzheimer’s disease and other age associated dementias.

Study Subjects

The project enrolled community-dwelling, elderly (age >65 years) African Americans living in Indianapolis and Yoruba living in Ibadan, Nigeria, employing the same research design, methods, and investigators.

Available Data

The funding for this study ended in 2012. During the course of the study, over 8000 (n=8528) elderly African American and Yoruba participants were evaluated over a 20 year period. A fixed minimal dataset is available through the NCRAD catalog. An additional dataset can be requested through the Indianapolis Ibadan Executive Committee.

Available Biospecimens

Genomic DNA, Cell Line DNA, Lymphoblastoid Cell Lines (LCLs)

NCRAD Family

The NCRAD Family Study began in 1990 and is still actively recruiting and following subjects. Subjects are contacted annually for updates on diagnoses within their family.

Study Subjects

Families with two or more members with early or late onset AD and related dementias. Samples are obtained from affected family members and unaffected relatives (typically over age 60).

Available Data

These families are not evaluated in person and all clinical information is obtained through telephone and medical record review. Therefore, data is limited to the following: family history; demographic data; medical records on the evaluation; diagnosis and treatment of symptomatic subjects; telephone cognitive batter; neuropathological findings when available.

Available Biospecimens

Genomic DNA, Cell Line DNA, Lymphoblastoid Cell Lines (LCLs), PBMCs

NIA-LOAD

The NIA Genetics Initiative/NIA-LOAD Study is a multi-site study initiated in 2002 with the purpose of identifying families with multiple members diagnosed with late-onset Alzheimer’s Disease (LOAD). Autopsy is offered to all active study subjects.

Study Subjects

The study requires at least two full siblings with late onset Alzheimer’s disease (symptoms developed after age 60) and a third family member who is either: 1) affected and over age 50; or 2) unaffected and over age 60. In addition, a control cohort was also enrolled. These subjects were enrolled over the age of 60 with no neurological problems such as Alzheimer’s disease, Parkinson’s disease or stroke and have no parents, children or siblings with Alzheimer’s disease.

Available Data

Enrolled family members complete a study visit (in person or by telephone). Study subjects are followed longitudinally and complete a study visit approximately every 2 years.

The catalog for the NIA-LOAD Study consists of a subset of variables that can be used to better understand the dataset and perform initial feasibility studies. Sites submit study data quarterly to the study data coordinating center located at Columbia University. This catalog is then updated quarterly after data cleaning is complete. Additional data can be requested from Columbia University.

Available Biospecimens

Genomic DNA, Cell Line DNA, Lymphoblastoid Cell Lines (LCLs)

ARTFL-LEFFTDS

ARTFL (The Advancing Research and Treatment for Frontotemporal Lobar Degeneration) consortium, includes academic medical centers partnered with patient support organizations dedicated to conducting clinical research in sporadic and familial frontotemporal lobar degeneration (FLTD) syndromes.

LEFFTDS (Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects) is a longitudinal, multicenter study enrolling participants from families with known mutations in one of the three genes most commonly associated with FTLD: MAPT, GRN, and C9ORF72. This study is aimed at understanding familial frontotemporal lobar degeneration (FTLD).

The goal of both projects is to discover new biomarkers for disease activity, standardize diagnostic criteria, and identify a large group of potential participants for clinical trials of new therapeutic agents.

Study Subjects

ARTFL: Approximately 1,560 patients and family members participate in clinical evaluations including history and examination, cognitive testing, questionnaires and surveys, and collection of blood. Patients include those with FTLD syndromes such as Corticobasal Degeneration Syndrome (CBD or CBS), primary progressive aphasias (PPA) including semantic variant (svPPA) and non-fluent variant (nvPPA), behavioral variant Frontotemporal Dementia (bvFTD), Frontotemporal Dementia with Amyotrophic Lateral Sclerosis (FTD-ALS), and Progressive Supranuclear Palsy (PSP). Healthy family members of patients with genetic causes of FTLD are also enrolled.

LEFFTDS: Enrolling 300 participants from families with known mutations in microtubule associated protein tau (MAPT), GRN, and C9ORF72. Both symptomatic and asymptomatic family members are enrolled and biospecimens are collected at three annual study visits; all study visits involve clinical evaluations and cognitive testing.

Available Data

The comprehensive database for ARTFL and LEFFTDS includes item-level data from medical, functional, and neuropsychological evaluations, as well as diagnostic information. Datasets may be requested through ARTFL and LEFFTDS; use must conform to the LEFFTDS and ARTFL Data Access and Publication Policy. There is a subset of participants with structural MRI data, available for download through the Laboratory for NeuroImaging at USC. A fixed minimal dataset is available through the NCRAD catalog.

Available Biospecimens

Genomic DNA, RNA, Plasma, Serum, PBMCs, and CSF are available from both cohorts.

ARTFL has biospecimens from the baseline study visit and includes CSF from a subset of subjects.

LEFFTDS has longitudinal biospecimens from 3 study visits. All subjects are asked to provide CSF but it is not required.