Partners


 

GAAIN seeks to establish trusted partnerships with centers that collect and study data from subjects with Alzheimer’s disease, dementia and aging. Given that the Alzheimer’s disease research community is large, diverse, and rich in resources, our goal is to bring together research leaders and maximize the potential for scientific discovery using existing genetic, imaging, clinical, behavioral and other data.

GAAIN’s success depends upon uniting Alzheimer’s disease and dementia study centers that have decided to participate in the partner program and our goal is to develop a strong platform from which investigators can study these Alzheimer’s disease data in a collaborative and innovative manner.

Benefits


 

GAAIN leaves the control over data access in the hands of the data owner and provided mechanisms for sharing data that have a low cost for the data owner.

GAAIN does not interfere with user authorization or data tracking processes. Data Partners continue to manage who can access their data.

GAAIN gives data owners credit by presenting the partner’s logo and a link to website on all GAAIN interfaces.

Our Partners


Partners


The Alzheimer’s Disease Neuroimaging Initiative (ADNI)

ADNI unites researchers with study data as they work to define the progression of Alzheimer’s disease. ADNI researchers collect, validate and utilize data such as MRI and PET images, genetics, cognitive tests, CSF and blood biomarkers as predictors for the disease. The North American ADNI’s study participants includes data from including Alzheimer’s disease patients, mild cognitive impairment subjects and elderly controls.

The Australian Imaging, Biomarker & Lifestyle Flagship Study of Ageing (AIBL)

AIBL is a longitudinal study of over 1,500 people over 60 years of age, assessed repeatedly at 18mo intervals. The aims are to determine which imaging and blood biomarkers, cognitive characteristics, and health and lifestyle factors track progression to symptomatic Alzheimer’s Disease and to identify opportunities and targets for early intervention.

Biomarkers of Cognitive Decline Among Normal Individuals (BIOCARD)

The BIOCARD Study is supported by a grant jointly funded by the National Institute on Aging (NIA) and the National Institute of Mental Health (NIMH). It is an extension of the Family Study/BIOCARD Study begun at NIMH in 1995. The overarching goal of the BIOCARD Study is to identify biomarkers associated with progression from normal cognitive status to cognitive impairment or dementia, with a particular focus on Alzheimer’s Disease. The domains of information collected as part of the study in the past include: cognitive testing, magnetic resonance imaging (MRI), cerebrospinal fluid (CSF), amyloid imaging (using PET-PiB), and blood specimens. Investigators at the Johns Hopkins University School of Medicine began evaluating participants in 2009. The subjects are seen annually. At each visit there are assessments of medical and cognitive status, as well acquisition of MRI, CSF, PET-PiB, and blood.

French National Alzheimer’s Database (BNA)

BNA is part of the French National Plan 2008–2012 for Alzheimer’s disease and related disorders. Activity and epidemiological follow up data are recorded nationwide within specialized memory centres. The national network currently includes 400 “memory units” (CMs Consultation Memoire) and 28 “Memory Resources and Research Centres” (CMRRs Centres Memoire, de Ressources et de Recherche) and volunteer private specialists (neurologists, geriatricians and psychiatrists). The BNA aims to provide epidemiological data as well as activity indicators. The information collected in the BNA consists of a limited set of data concerning demographic, diagnostic and clinical details defined by national consensus. The number of variables is restricted to facilitate and enhance the participation in this national database.

The Brain Health Registry (BHR)

BHR is a UCSF-based, internet-based registry and cohort led by Dr. Michael Weiner, MD, Professor of Radiology. BHR collects data using online self-report questionnaires and online neuropsychological tests. Self-report data includes cognitive status, medical history, family medical history, mood, diet, and other variables. The cohort is enriched in older adults who may be eligible for Alzheimer’s disease clinical trials, but includes adult participants across the age span, with and without memory problems and dementia. After registering and completing tasks, participants are asked by email to return to the BHR website at 6-month intervals to complete follow-up questionnaires and repeat neuropsychological tests. As of September 2016, BHR included over 47,000 consented participants. The overall goal of BHR is to accelerate the development of new treatments for brain diseases by facilitating clinical neuroscience research.

Canadian Longitudinal Study on Aging (CLSA)

The CLSA is a 20-year prospective study recruiting a sample of 50,000 men and women between the ages of 45 and 85 years at baseline. All participants provide a common set of information on demographic, social, physical, clinical, psychological, economic, and health service utilization aspects relevant to health and aging. Thirty thousand participants provide additional information through physical examinations and the collection of biospecimens (blood and urine samples). The remaining 20,000 provide information through telephone interviews.

Coalition Against Major Diseases

The Coalition Against Major Diseases (CAMD; http://c-path.org/programs/camd/) CODR database contains patient-level control arm data (6,500 patients; 24 clinical trials; AD & MCI), fully anonymized and remapped using the CDISC SDTM v3.1.2 Standard. The database includes, but is not limited to, demographic information, APOE4 genotype, concomitant medications and cognitive scales (MMSE & ADAS-Cog). Currently no AD biomarker data is included. SDTM knowledge is required to effectively use the data.

Center for Neurodegenerative Disease Research (CNDR)

The CDNR is a “center without walls” wherein University of Pennsylvania investigators collaborate in the study of aging-related neurodegenerative diseases. The mission of CNDR is to conduct multidisciplinary clinical and basic research studies to increase understanding of the causes and mechanisms leading to brain dysfunction and degeneration in Alzheimer’s disease (AD), Parkinson’s disease (PD), Frontotemporal disease (also referred to as Frontotemporal degeneration or FTD), Amyotrophic Lateral Sclerosis (ALS) and other neurodegenerative disorders that occur with advancing age.

Dementia and Aging Research of Taiwan (DART)

DART at National Taiwan University (NTU) is a multi-center case-control study in Taipei, Taiwan. A total of 938 participants aged 60 or older [n=292 Alzheimer’s disease (AD), n= 143 small-vessel vascular dementia (VaD), and n=503 healthy controls] were recruited from three teaching hospitals between 2007 and 2011. This study has genome-wide (using DNA microarray chips for Chinese ethnic group) and candidate-gene data (including APOE e4 status and 39 SNPs of 12 genes), information of demography, comorbidities, and leisure activities.

DESCRIPA

Dominantly Inherited Alzheimer Network (DIAN)

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

European Alzheimer's Disease Neuroimaging Initiative

E-ADNI, alias PharmaCog, is a partnership of 32 academic and industry actors from 7 countries, co-ordinated by GlaxoSmithKline R&D and the Université de la Méditerranée. It started its activities on January 1, 2010 thanks to significant funding (EUR 20.2 million) from the Innovative Medicines Initiative. Its launch marks the start of the most ambitious European project for tackling bottlenecks in Alzheimer's disease research and drug discovery.

European Diffusion Tensor Imaging Study in Dementia (EDSD)

The EDSD data bank includes 467 Diffusion Tensor Imaging (DTI) and 467 structural MRI scans (MPRAGE) from patients with AD, MCI and Healthy Elderly Subjects. The EDSD is a cross-sectional multicenter study and it was approved by local ethics committees at each of the participating centers, i.e. (i) the ethics committee of the medical faculty of the Ludwig-Maximilian-University, Munich, (ii) the ethics committee of the IRCCS San Giovanni di Dio FBF, Brescia, (iii) the Faculty Research Ethics Committee, Faculty of Health Sciences, Trinity College Dublin, (iv) the ethics committee at the Landesärztekammer Rheinland-Pfalz, Mainz, (v) the ethics committee of San Raffaele Hospital, Milan, (vi) the ethics committee of the faculty of medicine of the Goethe University, Frankfurt, (vii) the ethics committee of the University Medical Center, Freiburg, and (viii) the ethics committee of the medical faculty of the University of Rostock.

Fundacio ACE: Institut Català de Neurociències Aplicades (F. ACE)

F. ACE is a non-profit organization located in Barcelona. F. ACE was registered and declared a welfare institution by the Government of Catalonia in 1995. The entity was designed by the Neurologist Dr. Mercè Boada, MD PhD and by the Psychologist Lluís Tárraga following the organization, methodology of Alzheimer’s Research Centers funded by the National Institute of Aging/NIH (USA). F. ACE mission is to manage dementia in a multidisciplinary way and it has become a global reference in the treatment and management of dementia. The foundation has executed dozens of competitive research projects since its creation. It has made important contributions in the field of neurodegeneration. Its research is pretty wide from social research to molecular epidemiology, phenomics, genome-wide association studies, biomarker research, neuroimaging or brain training software.

The Framingham Heart Study (FHS)

FHS initiated in 1948 and is a large epidemiologic study originally focused on determining risk factors for heart disease and stroke. Since 1976, Framingham has extended its research to include the study of Alzheimer’s disease (AD) and other types of dementia.

Hellenic Longitudinal Investigation of Aging and Diet (HELIAD)

HELIAD is a population-based, multidisciplinary, collaborative study designed to estimate the prevalence and incidence of Alzheimer’s disease, other dementias, mild cognitive impairment, and other neuropsychiatric conditions of aging in the Greek population and to investigate associations between nutrition and cognitive dysfunction/age-related neuropsychiatric diseases in this Mediterranean population. The study also ascertains several demographic, medical, social, environmental, clinical, nutritional, and neuropsychological determinants and lifestyle activities.

Health and Retirement Study

The University of Michigan Health and Retirement Study (HRS) is a longitudinal panel study that surveys a representative sample of approximately 20,000 people in America over the age of 50 every two years.

Italian Alzheimer’s Disease Neuroimaging Initiative (I-ADNI)

I-ADNI is a cross sectional study and consists of 262 patients with subjective memory impairment, mild cognitive impairment, Alzheimer's dementia, and frontotemporal dementia enrolled in 7 Italian centers. Few cognitively healthy elderly controls were also included. MRI site qualification and MP-RAGE quality assessment was applied following the NA-ADNI procedures.

Layton Aging and Alzheimer’s Disease Center (LAADC)

The LAADC promotes interactive, multidisciplinary research among the scientific community. Our primary emphasis is on studies of preclinical dementia, as well as early dementia. Well-characterized patients, clinical, MRI, genetic and family history data, as well as tissues and biological specimens are made available to investigators and research groups worldwide.

Laboratory of Magnetic Resonance Research

The Biomedical Imaging Core and the Laboratory of Magnetic Resonance Research support research projects that utilize imaging modalities in human and animals. The team uses MRI for the studies of neurodegenerative diseases, including Alzheimer's Disease and Parkinson's Disease. Since 2008, functional images such as diffusion MRI, susceptibility weighted images and resting state fMRI have been acquired. In dementia studies, more than 200 subjects have been followed longitudinally.

Laboratory of Neuro Imaging (LONI)

The LONI datacenter at the Institute for Neuroimaging and Informatics (INI) is secured by two levels of physical access, to insure HIPAA compliance for data security. The main facility is secured 24/7 with access control devices. with a second layer of proximity card access to the datacenter itself. The high performance compute infrastructure within the datacenter boasts 3,328 cores and 26 terabytes of aggregate memory space. Institutions and scientists worldwide rely on the LONI’s resources to conduct research. LONI is architected using a fault-tolerant, high-availability systems design to ensure 24/7 functionality. The primary storage cluster is 23 Isilon nodes with 2.4 usable petabytes of highly available, high performance storage. Data in these clusters moves exclusively over 10g links excepting node to node communication in the Isilon cluster which is handled by QDR Infiniband, providing 40 gigabit bidirectional throughput on each of the Isilon cluster’s 46 links.

National Alzheimer’s Coordinating Center (NACC)

NACC, established in 1999, maintains a cumulative database including clinical evaluations, neuropathology data when available, and now MRI imaging. The data, contributed by the 34 past and present Alzheimer’s Disease Centers (ADCs) supported by the U.S. National Institute on Aging/NIH, are collected from all enrolled subjects using a standardized evaluation. The clinic-based population includes subjects with Alzheimer’s disease and related disorders, as well as cognitively normal subjects and those with MCI. Because of its size, breadth, and range of diagnoses, the NACC database is an important resource for generating and evaluating hypotheses, examining rare disease subtypes, and observing clinical-pathologic correlations. With the recent introduction of MRIs to the NACC database, studies of neuroimaging correlates of cognition are now possible as well. No Alzheimer’s disease database of this magnitude has ever been assembled in the U.S. NACC invites researchers in the AD community to take advantage of this valuable resource.

neuGRID for You (N4U)

N4U is an innovative e-infrastructure which provides neuroscientists, clinicians, bioinformaticians and pharmaceutical professionals with a “virtual” imaging laboratory, where they can upload, use, and share expert applications and data for brain analyses. In neuGRID, applications come with large reference neuroimaging datasets, to allow users to build, test and scientifically validate computationally intensive biomarkers, backed with specialized support and training. Thanks to distributed storage services (20 TB of physical space) and grid/cloud computational resources (6000 cores), analyses with neuGRID are much faster than traditional-style lab-based analyses.

The National Institute on Aging Genetics of Alzheimer’s Disease Data Storage Site (NIAGADS)

NIAGADS is a national genetics data repository that facilitates access of genotypic data to qualified investigators for the study of the genetics of late-onset Alzheimer’s disease. It is the policy of the NIA that all genetic data derived from NIA-funded studies for the genetics of late-onset Alzheimer’s disease be deposited at NIAGADS, another NIA-approved site, or both. NIAGADS, along with other NIA-approved sites, will make these Genetic Data and Associated Phenotypic Data available to qualified investigators in the scientific community for secondary analysis.

Open Access Series of Imaging Studies (OASIS)

OASIS consists of (I) a cross-sectional collection of 416 subjects aged 18 to 96. 100 of the included subjects over the age of 60 have been clinically diagnosed with very mild to moderate Alzheimer's disease (AD). (II) A longitudinal collection of 150 subjects aged 60 to 96. Each subject was scanned on two or more visits, separated by at least one year for a total of 373 imaging sessions. For each subject, 3 or 4 individual T1-weighted MRI scans obtained in single scan sessions are included. The subjects are all right-handed and include both men and women. 72 subjects were non demented, 64 were demented, including 51 individuals with mild to moderate Alzheimer's disease.

The Personality and Total Health (PATH) through life project

The PATH through life project is an on-going, population-based, longitudinal cohort study that started in 1999, comprising of 7485 participants from Canberra and Queanbeyan, Australia. Participants were aged 20-24 years (20+), 40-44 years (40+) and 60-64 years (60+) and will be followed for 20 years, thus spanning the ages from 20 to 84 years. In addition to the main study, subsamples were drawn from the 40+ and 60+ cohorts to participate in multiple sub-studies – the MRI sub-study, cardiovascular sub-study, Health and Memory sub-study, ‘Exercise, energy expenditure and healthy ageing’ sub-study and retinal imaging sub-study. As of 2015, four waves of data have been collected for all three cohorts, with four and three waves of MRI data for the 60+ and 40+ cohort respectively. The original aims of the study were (i) to delineate the course of depression, anxiety, substance use and cognitive ability with increasing age across the adult life span; (ii) to identify environmental and genetic risk factors influencing individual differences in the courses of these characteristics; and (iii) to investigate inter-relationships over time between the three domains of depression and anxiety, substance use, and cognitive ability and dementia.

Quantitative Imaging Biomarker Alliance (QIBA)

QIBA was started by the Radiological Society of North America (RSNA) in 2007 to unite researchers, healthcare professionals and industry stakeholders in the advancement of quantitative imaging and the use of biomarkers in clinical practice and trials. The Radiological Society of North America (RSNA) is an international society of radiologists, medical physicists and other medical professionals. RSNA is committed to helping transform patient care by making radiology a more quantitative science. QIBA’s mission is to improve the value and practicality of quantitative biomarkers by reducing variability across devices, patients and time. Modality-specific teams of researchers, healthcare professionals and industry stakeholders work together to write standards documents called QIBA Profiles to accomplish this mission. QIBA is an official Affiliate of GAAIN and can support GAAIN by educating GAAIN partners about the QIBA process, making the released QIBA Profiles available to the GAAIN Partners and facilitating their use, thereby ensuring higher quality imaging data in the GAAIN database.

Wisconsin Longitudinal Study (WLS)

WLS has followed the life course of 10,317 Wisconsin high school graduates of 1957 and randomly selected siblings through repeated surveys (in 1964, 1975, 1993-94, 2004-06, and 2010-11) and links to such data resources as high school records and yearbooks and tax, disability, social security, Medicare, and death records. WLS has thus created a detailed record of educational, social, psychological, economic and mental and physical health characteristics in a relatively homogeneous population that is almost entirely of Northern and Western European ancestry, thus strengthening the power of genetic studies against population stratification. In 2007-8, the project collected DNA samples by mail and additional samples were collected in the course of home interviews between March 2010 and November of 2012. Since 1991, the WLS has been supported by the National Institute on Aging (AG-9775, AG-21079, AG-033285, and AG-041868).

Wisconsin Registry for Alzheimers Prevention (WRAP)

WRAP at the University of Wisconsin Madison is a natural history observational study comprised of adult children (72%) of persons with sporadic AD and matched people without parental history of AD. The major goals of WRAP are to understand the earliest cognitive changes that occur and risk and resilience characteristics. The study started in 2001 and enrolled 1542 people over 12 years. The mean age at baseline was 53 and there is now an average of 8 years of follow up. The second assessment is four years after baseline, and subsequent visits are every two years. Assessments include a neuropsychological battery, certain labs, and extensive lifestyle questionnaires ranging from health history, physical activity, caregiver and other stress, social support, sleep quality, and mood. DNA from blood is collected at each visit. SNPs from the major AD-risk genes have been obtained. Blood specimens including plasma and whole blood are collected and stored. A subset of the cohort enrolled in one or more linked biomarker studies including amyloid PET imaging, FDG PET, MRI and LP for CSF.


Pledged Partners

The full participation of our pledged partners is coming soon.

  • Aging Brain Study
  • Centre for Healthy Brain Ageing
  • Korean Longitudinal Study on Cognitive Aging and Dementia
  • Longitudinal Online Research and Imaging System
  • National Cell Repository for Alzheimer’s Disease
  • The PATH Through Life Project

  • Risk Evaluation and Education for Alzheimer’s Disease Study
  • TGen
  • USC/ UAB Collaboration

Supported Data Initiatives


 

In multicenter collaboration, there is strong need for a common understanding for specimen/data collection, biomarker assays, data analysis and the reporting of results. These efforts aim to tackle important issues to help investigators work together. GAAIN supports initiatives that promote data sharing and standardization within the Alzheimer’s disease and dementia research community around the globe.

Centiloid Project

Become a Partner


Frequently Asked Questions for Partners

What are the requirements to become a partner?

Data Partners have collected data on subjects with Alzheimer’s disease or related dementias and are interested in accelerating research on the causes, diagnosis, treatment, and prevention of Alzheimer’s disease. To start the process, you will need to fill out the GAAIN Partner Application and agree to the terms in the non-legally binding Memorandum of Understanding (MOU).

Once I agree to become a partner, what are the next steps?

We will contact you and work with you to connect your data to the GAAIN network. This will involve mapping your data into the GAAIN schema and installing a small, lightweight client application on your computer. We will guide you through each step and offer technical support.

Do partners lose ownership of their data?

No. You always retain ownership of your data and can detach your data from the GAAIN network at any time.

Will my data stay secure?

The GAAIN network is secured from unauthorized access using industry standard secure transmission protocols. GAAIN investigators must abide by the user authentication and data use policies as stipulated by each partner.

Does the partners program include a publications policy?

GAAIN investigators must cite partners and their funding sources in all publications that use their data. Partners will also receive recognition on the GAAIN website and in any GAAIN-related presentations.

What if I can no longer participate in the partner program?

If, for whatever reason, you can no longer participate in the GAAIN Partner Program, let us know in writing 60 days prior to terminating your partnership. There is no obligation to continue and you always have full control of your data.

Ready to become a Partner?

Complete the GAAIN Partner Application online below or Download the PDF and email the completed document to info@gaain.org.
APPLY

Become an Affiliate


Frequently Asked Questions for Affiliates

What are the requirements to become an Affiliate?

Affiliates provide resources (other than data) to GAAIN, including data standards, terminology and computer infrastructure, and are interested in accelerating research on the causes, diagnosis, treatment, and prevention of Alzheimer’s disease. To start the process, you need to fill out the GAAIN Affiliate Application and agree to the terms in the non-legally binding Memorandum of Understanding (MOU).

Once I agree to become an Affiliate, what are the next steps?

We will contact you directly on how we can integrate your resources into GAAIN network.

Does the Affiliates Program include a publications policy?

GAAIN investigators must cite Affiliates and their funding sources in all publications that use their data. Affiliates will also receive recognition on the GAAIN website and in any GAAIN-related presentations.

What if I can no longer participate in the Affiliates Program?

If, for whatever reason, you can no longer participate in the GAAIN Affiliates Program, let us know in writing 60 days prior to terminating your collaboration. At the time of agreeing to the MOU, you will be given an opportunity to state what, if any, resources may be continued to be used without active support.

Ready to become an Affiliate?

Complete the GAAIN Affiliate Application online below or Download the PDF and email the completed document to info@gaain.org.
APPLY