Large Cohort Studies

ADNI:

The ADNI study has three phases: ADNI1, ADNI GO and ADNI2. New participants were recruited across North America during each phase of the study and agreed to complete a variety of imaging and clinical assessments. Participants are followed and reassessed over time to track the pathology of the disease as it progresses. Results are then shared by ADNI through USC’s Laboratory of Neuro Imaging’s Image Data Archive (IDA).




LONI:
The LONI Image Data Archive (IDA) provides an integrated environment for safely archiving, querying, visualizing and sharing neuroimaging data. The archive facilitates the de-identification and pooling of data from multiple institutions, protecting data from unauthorized access while providing the ability to share data among collaborative investigators. The archive provides flexibility in establishing project metadata, accommodating one or more research groups, species, sites and other attributes. Archiving data is simple, secure and requires nothing more than a computer with internet connection and a web browser. 

The IDA houses data for dozens of medical imaging projects, from small, single institution studies to large multi-site consortia efforts. Although access to data is controlled by the PI of each project, the IDA contains a small number of projects that either allow open data access or make the data available to those who complete an online application form and are approved by a review committee. Information about these projects is shown in the table below.

ICBM: 
The International Consortium for Brain Mapping (ICBM): The ICBM Subject Database is a web-based database infrastructure that simplifies image dataset collection, organization and dissemination. A web interface provides the means to query the data base using a combination of subject demographics and scan-related attributes. Authorized users may view representations of the data and form collections of datasets that can be downloaded or fed directly into the Pipeline environment for distributed processing and analysis. The Database has been constructed to provide an effective means for archival and protection of collaborator collected image data. The goal of this software is to provide a convenient mechanism for searching the existence of particular image data while protecting its usage at the same time. 


HCP:
Human Connectome Project: MGH-USD collaboration. Data include brain image and results volumes obtained from the advanced Siemens 3T Connectom imaging system based at MGH as well as data obtained using conventional imaging systems.  The Connectome scanner has been delivered to MGH and was officially installed and tuned up on September 20, 2011.


SMART: 
A prospective cohort study aimed at investigating brain changes on magnetic resonance imag- ing (MRI) in patients with manifest arterial disease. From 2001 to 2005, all patients newly referred to the University Medical Center Utrecht with manifest coronary artery disease, cerebrovascular dis- ease, peripheral arterial disease, or an abdominal aortic aneurysm and without MR contraindications were invited to participate. During a 1-day visit to our institution, all patients underwent an MRI of the brain, physical examination, and ultrasonography of the carotid arter- ies. Blood and urine samples were collected after an overnight fast. Risk factors, medical history, and medication use were assessed using questionnaires. Between 2006 and 2009, follow-up measurements took place, including MRI of the brain. 1309 patients included (As of 2015)

Rotterdam: 
The Rotterdam Elderly Study is a prospective cohort study in the Ommoord district in the city of Rotterdam, the Netherlands [Hofman et al., 1991]. Following the pilot in 1989, recruitment started in January 1990. The main objectives of the Rotterdam Study were to investigate the risk factors of cardiovascular, neurological, ophthalmological and endocrine diseases in the elderly. Up to 2008, approximately 15,000 subjects aged 45 years or over have been recruited. Participants were interviewed at home and went through an extensive set of examinations, bone mineral densiometry, including sample collections for in-depth molecular and genetic analyses. Examinations were repeated every 3-4 years in potentially changing characteristics. Participants were followed for the most common diseases in the elderly, including coronary heart disease, heart failure and stroke, Parkinson's disease, Alzheimer's disease and other dementias, depression and anxiety disorders, macular degeneration and glaucoma, diabetes mellitus and osteoporosis. 

Since 1999, the Rotterdam Study is approved by a special permit issued by the Ministry of Health, Welfare, and Sport of The Netherlands (under Article 3 of the Population Screening Act (the WBO, in Dutch)). As such, the Rotterdam Study is exempted from obtaining separate IRB approvals for the sub-studies that are conducted within the framework of the Rotterdam Study. All studies conducted within the Rotterdam Study, including the Rotterdam Scan Study, are being notified to the Ministry, which then judges whether that specific study addition requires a permit.

The Rotterdam Study is directed by a Management Team comprising the scientific principal investigators, the Study Coordinator, head IT , head data management and the managing director Health Sciences. 

BIOCARD: 
The BIOCARD Study is a longitudinal, observational study of elderly individuals, the majority of whom had a family history of AD, who have been longitudinally followed since 1995 and have had comprehensive clinical and cognitive assessment, cerebrospinal fluid (CSF) sampling through lumbar puncture, magnetic resonance imaging (MRI) scans, and blood collection. At present, the BIOCARD has an enrollment of 278 participants (mean age 68 years, standard deviation 9 years), of whom 201 are cognitively-normal and 77 have either mild impairment or dementia.

CamCAN: 
https://www.cam-can.org/
The Cambridge Centre for Ageing and Neuroscience (Cam-CAN) is a large-scale collaborative research project at the University of Cambridge, launched in October 2010, with substantial initial funding from the Biotechnology and Biological Sciences Research Council (BBSRC), followed by support from the Medical Research Council (MRC) Cognition & Brain Sciences Unit (CBU) and the European Union Horizon 2020 LifeBrain project. The Cam-CAN project uses epidemiological, cognitive, and neuroimaging data to understand how individuals can best retain cognitive abilities into old age.

AIBL: 
https://aibl.csiro.au/publications/

AIBL is a study of over 1,100 people assessed over a long period of time ( > 4.5 years)  to determine which biomarkers, cognitive characteristics, and health and lifestyle factors determine subsequent development of symptomatic Alzheimer’s Disease (AD).

The baseline inception cohort consisted of:

  • 211 individuals with AD as defined by NINCDS-ADRDA (McKhann et al, 1984);
  • 133 individuals with Mild Cognitive Impairment (MCI) – a clinical syndrome characterized by reduced cognitive performance (often involving memory), which represents a high risk state for the development of frank AD (Petersen et al.,1999; Winblad et al., 2004);
  • 768 healthy individuals without cognitive impairment. This group included volunteers with at least one copy of the ApoE ε4 allele, volunteers without a copy of the ApoE ε4 allele and 396 volunteers who expressed subjective concern about their memory function. Memory complaints were elicited by the response to the question, “do you have difficulties with your memory?”.