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The Swedish BioFINDER Study consists of four cohorts where patients are included prospectively and followed longitudinally (www.biofinder.se). At baseline, these individuals undergo detailed and standardized cognitive, neurological and psychiatric examinations. Plasma, blood, CSF and samples for cell biology studies are collected. Most also have also undergone advanced Magnetic Resonance Imaging, and in many of the non-demented cases Amyloid and Tau positron emission tomography (PET) imaging have also been done.

The subcohorts include:
i) Healthy volunteers. Ca 350 volunteers aged 60-100 years old from the population-based Malm’ EPIC cohort (380 participants as of Feb 2016). Follow-up time: at least 8 years with investigations repeated every second year. In this cohort, appr. 20% is expected to have preclinical AD.
ii) Patients with Mild Cognitive Impairment (MCI) or Subjective Cognitive Decline (SCD). Ca 500 patients with MCI/SCD aged 60-80 years. Follow-up time: at least 6 years with investigations repeated every year. In this cohort, appr. 50% is expected to have prodromal AD.
iii) Patients with different dementia disorders. We include ca 250 dementia cases aged 40-100 years with AD, VaD, DLB, PDD or FTD. Follow-up time: at least 2 years with investigations repeated every year.
IV) Patients with Parkinson’s disease (PD) and PD-related disorders. Ca 300 patients with Parkinson-like symptoms. Follow-up time: at least 6 years with investigations repeated every year.

Last Update 21/09/2017

The Wisconsin Longitudinal Study (WLS) is a longitudinal population cohort started in 1957, with a questionnaire administered to all Wisconsin High School seniors. In 1964, a randomly selected one-third of the members of the class of 1957 were followed up with a brief questionnaire to parents asking about their child’s post high-school education and occupation. Direct contact with the graduate began with a telephone interview in 1975, and subsequent telephone and mail surveys in 1993 2004. In 1977 a subset of graduate’s siblings were interviewed by phone and in 1995 and 2005 interviews were conducted with one sibling from each family whenever possible. Spouses of Graduates and Siblings who were married at the time of the 2004/2005 interview were also interviewed by phone. Most recently in-person interviews with a leave-behind questionnaire were administered in 2011 to both the graduate and sibling panels. Saliva was collected from both graduate and sibling participants via a mail-effort in 2008 and during the in-person 2011 interview.

Last Update 21/09/2017 

Next Steps (previously known as the Longitudinal Study of Young People in England – LSYPE) is a major innovative cohort study of young people. The study began in 2004 and included all young people in Year 9, aged between 13 and 14, who attended state and independent schools in England.

Next Steps is one of the main information sources for the formation and appraisal of policies relating to young people and will continue to be so for at least the next 10 years. The baseline data will be used to monitor the progress of the cohort group, evaluate the success of policies aimed at this group and provide an evidence base for further policy development. The study brings together data from a wide range of sources and reflects the variety of influences on learning and progression.

Following the initial survey at age 13-14, the cohort members were visited every year until 2010, when they were age 19-20. Young people were interviewed along with their parents up to sweep 4 (age 17).

The most recent survey took place in 2015/16, when the cohort members were 25 years old. It maintained the strong focus on education, but the content was broadened to become a more multi-disciplinary research resource. Data was collected about cohort members’ housing and family life, employment and economic circumstances, education and job training, physical and emotional health, and identity and participation. A wide range of administrative data linkage consents were collected in the domains of health, education, economics and criminal behaviour.

Last Update 21/09/2017

The Sydney Centenarian Study is an ongoing project that has established a representative cohort of very elderly Australians. It has provided evidence that dementia is not inevitable at this age and that independent living is common. The data collected to date provides an excellent resource to explore the genetic and environmental factors that contribute to long life and successful cognitive aging. The study is ongoing and actively recruiting, with numerous publications in preparation.

Last Update 21/09/2017

In this epidemiological study we examined the prevalence of medical comorbidity in elderly subjects with cognitive deficits and dementia. The ReGAl Project (Rete Geriatrica Alzheimer- Geriatric Network on Alzheimer’s disease) collected data in 33 Italian Geriatric memory clinics from January 2001 to December 2005. A total of 4,075 patient were recruited.

Last Update 21/09/2017

The ADC was setup in 2004 by including all patients who come to the Alzheimer Center for diagnostic work up and who consent to give all data, collected as part of the routine diagnostic work up, for research. The aim is and was to facilitate research into new and existing biomarkers in the broadest sense, to establish diagnostic, prognostic and theragnostic values and further insight into the pathogenesis of neurodegenerative dementias. The data are collected on a weekly basis and consist of baseline data and annual follow up data. Since it is conception it has grown into one of the largest clinical databases in the dementia field. More info on setup, characteristics and data collection can be found in van der Flier WM, Pijnenburg YA, Prins N, Lemstra AW, Bouwman FH, Teunissen CE, van Berckel BN, Stam CJ, Barkhof F, Visser PJ, van Egmond E, Scheltens P.

Optimizing patient care and research: the Amsterdam Dementia Cohort. J Alzheimers Dis. 2014;41(1):313-27. doi: 10.3233/JAD-132306. PubMed PMID: 24614907.

Last Update 21/09/2017

Alberta’s Tomorrow Project (ATP) is a longitudinal study tracking the health of 55,000 adults aged 35-69 years in this western Canadian province. ATP was launched in 2000 as a prospective cohort research platform to study the relationship between environmental, lifestyle, and genetic factors and the incidence of cancer and chronic diseases.

In 2008, ATP joined a nation-wide research platform called the Canadian Partnership for Tomorrow Project (CPTP) representing more than 300,000 participants from five provincial cohorts: Alberta, British Columbia, Ontario, Quebec and the Atlantic provinces (Prince Edward Island, New Brunswick, Newfoundland and Labrador, and Nova Scotia). Together, the consortium of five regional studies provides greater statistical power for research, as well as opportunities to examine geographical trends in health and wellbeing across Canada’s vast landscape.

The information contained herein is specific to the ATP cohort.

Last Update 21/09/2017

The Lc65+ project is a longitudinal population-based study focusing on the development of frailty after the age of 65. The main methods in the Lc65+ study are:

ﾕ long term observation of subjects, beginning at 65 to 70 years, an age when frailty is still unusual, in order to study its initiation and development;
ﾕ prospective data collection on a large range of health dimensions, including psycho-social characteristics, in order to investigate the temporal sequence linking frailty, its risk factors, modulators, and outcomes:
ﾕ a population approach considering frailty as a central parameter of health in ageing populations that is useful not only for surveillance, but also for the evaluation of preventive interventions.

Follow-up is based on a yearly questionnaire sent by mail to the participant’s home. In addition, subjects are invited to the study center every three years for an interview and examination similar to those performed at baseline. The follow-up is unlimited in time and is not interrupted in the case of nursing home admission.

Last Update 21/09/2017

The Older Australian Twins Study is a longitudinal, multi-centre study that investigates healthy brain ageing in older twins (65+ years). OATS commenced in New South Wales in January 2007, in Queensland in December 2007, and in Victoria in February 2008. Since the OATS study started we have followed our twin volunteers up every two years to check on their psychological and physical health. Participants undergo rigorous medical and cognitive function tests, with many participants’ also providing bloods samples and having a magnetic resonance imaging (MRI) scan of their brain. In 2015 we finished our 4-year follow ups. OATS assessed 623 participants at baseline, 450 at the 2-year follow up, and 389 completed their 4-year follow-up.

Last Update 21/09/2017

The Puerto Rican Elderly: Health Conditions (PREHCO) study investigates issues affecting the elderly (individuals over 60 years of age) population in Puerto Rico: health status, housing arrangements, functional status, transfers, labor history, migration, income, childhood characteristics, health insurance, use of health services, marital history, mistreat, sexuality, etc. It is an island-wide, longitudinal sample survey of target individuals and their spouses with two waves of data collection: 2002-2003 and 2006-2007.

In the first phase of the PREHCO project, 4,291 elderly persons 60 years or older and 1,442 spouses were interviewed (1,042 of the latter being 60 years or older). A second wave of the project (2006-2007) converted PREHCO in a longitudinal study. In the second wave, those same participants were asked to do a follow-up survey, in which 3,891 target interviews and 1,260 spouse interviews were completed. The deceased and institutionalized participants were also interviewed using a proxy.

Last Update 21/09/2017