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The CONSTANCES general-purpose cohort is intended to serve as an epidemiological research infrastructure accessible to the epidemiologic research community with a focus on chronic diseases and aging. CONSTANCES is designed as a randomly selected representative sample of French adults aged 18-69 years at inception; 200,000 subjects will be included over a five-year period. At inclusion, the selected subjects are invited to complete questionnaires and to attend a Health Screening Clinic (HSC) for a comprehensive health examination. A biobank will be set up. The follow-up includes a yearly self-administered questionnaire, and a periodic visit to an HSC. Social and health data are collected from the French national databases. Data collected for participants include social and demographic characteristics, socioeconomic status, life events, behaviors, and occupational factors. The health data cover a wide spectrum: self-reported health scales, reported prevalent and incident diseases, long-term chronic diseases and hospitalizations, sick-leaves, handicaps, limitations, disabilities and injuries, healthcare utilization and services provided, and causes of death. To take into account non-participation at inclusion and attrition throughout the longitudinal follow-up, a cohort of non-participants was set up and will be followed through the same national databases as participants.

Last update – 20/06/2017

The key goal of EUROSCA-NHS is to determine and compare the rate of disease progression in SCA1, SCA2, SCA3 and SCA6. To this end, a newly developed and validated ataxia scale (Scale for the Assessment and Rating of Ataxia, SARA) will be used. EUROSCA-NHS has a number of secondary aims including determination of the order and occurrence of non-ataxia symptoms, assessment of activities of daily living (ADL) and quality of life (QoL), and identification of predictors of disease progression and survival.

Patients are first seen at a baseline visit, followed by annual visits for 3 years scheduled ﾱ 3 months around the specified time point. After the initial 3 year observation period, visits are done at irregular intervals each time they went to hospital.

Last update – 12/08/2017

Disease follow-up for all the cohorts is conducted by active follow-up every 5 years and linkage to national disease and death registries.

The Singapore Health study is a nationally representative cross-sectional survey with the aim to estimate the prevalence of:

  1. Health conditions of hypertension, hyperlipidaemia, diabetes, overweight and obesity, hearing loss and chronic kidney disease, mental wellbeing and to allow comparison of these data with the National Health Survey 2010;
  2. Specific health behaviours; and
  3. Participation in health screening for chronic diseases, cervical cancer, breast cancer, colorectal cancer

2,352 Singapore citizens and permanent residents of age 18 to 79 years old participated in the survey from August 2012 to March 2013. Overall response rate was 40%. 1956 of the participants also underwent physical examination, additional surveys and provided blood and urine samples for tests and storage.

Last update – 28/06/2017

The aim of RISCA is to answer the following questions:

  1. What is the incidence of disease manifestation in mutation carriers?
  2. Which clinical signs precede the onset of manifest ataxia in SCA1, SCA2, SCA3 and SCA6?
  3. What are the prevalence and incidence of preceding signs?
  4. Are the prevalence and incidence of preceding signs affected by genotype, gender, age, estimated time until disease manifestation and repeat length?
  5. Does the presence of certain preceding signs predict the manifestation of ataxia?
  6. Are there MRI alterations that precede the onset of ataxia?

Study participants are followed at 24 months intervals over six years and than at irregular intervals. At each visit, study participants are asked in a structured interview for a number of predefined clinical signs that potentially precede the onset of ataxia.

Last update – 26/05/2017 

The original purpose of the Add Health study was to help understand the causes of adolescent health and health behaviour with special emphasis on the effects of multiple contexts of adolescent life.

The cohort was then followed through their transition to adulthood and research turned to understanding the determinants and consequences of developmental and health trajectories from adolescence into adulthood.

Add Health combines longitudinal survey data on respondents’ social, economic, psychological and physical well-being with contextual data on the family, neighbourhood, community, school, friendships, peer groups, and romantic relationships, providing unique opportunities to study how social environments and behaviours in adolescence are linked to health and achievement outcomes in young adulthood. The fourth wave of interviews expanded the collection of biological data in Add Health to understand the social, behavioural, and biological linkages in health trajectories as the Add Health cohort ages through adulthood, and the fifth wave of data collection continues this biological data expansion (2016-2018).

Last update – 03/02/2017

The Dunedin Multidisciplinary Health and Development Study (DMHDS) is an ongoing, longitudinal study of the health, development and well-being of a general sample of New Zealanders. They were studied at birth (1972-73), followed up and assessed at the age of three when the longitudinal study was established. Since then they have been assessed every two years until the age of 15, then at ages 18 (1990-91), 21 (1993-94), 26 (1998-99), 32 (2003-2005), and 38 (2010-2012). It is planned to next see the Study members at age 44/45 and beyond.

Last update – 31/01/2017

GENFI is a five year longitudinal biomarker cohort study of genetic Frontotemporal Dementia and its associated disorders (including MND/ALS) investigating members of families with a known mutation in GRN or MAPT or an expansion in C9orf72 (including those affected with the disorder as well as at-risk members of families). Non-carrier first-degree relatives will serve as a control group.
All GENFI participants will be assessed longitudinally (annually) with a set of clinical, neuropsychiatric, cognitive, imaging and biosample protocols.

Last update – 25/01/2017

Helsinki Birth Cohort Study (HBCS) 1934-44 is a unique birth study including 13,345 subjects in the epidemiological cohort. The cohort is a longitudinal study cohort with data throughout the life span including prenatal life, early childhood and later life. Besides extensive epidemiological data over 2000 subjects have been randomly selected for a clinical part. The subjects have been followed up clinically for over one decade with extensive phenotypic data available including metabolic data, dietary information as well as other lifestyle data. Psychological factors including personality, depression and anxiety has been focused upon.

Last update – 07/02/2017

The Thai Cohort Study was established in 2005 in order to study the dynamics, drivers and impacts of the population transition from high maternal and child mortality and infectious disease to low mortality and chronic disease. We call this the ‘health-risk transition’ – synchronised change in causal risks and health outcomes affecting whole populations, with Thailand being a good example in the SE Asia region. This transition can be divided into overlapping or interacting component transitions such as the nutrition transition, the health system transition, sexual transition, the transport transition, the (formal) work transition and the environment transition (including urbanisation). As our understanding improves we are better able to inform governments about changing health service demands and changing prevention needs — with universal
health insurance and Thai obesity research being two prominent examples of national response.

Cohort members are distance-learning students who resided nationwide and were enrolled at the Sukhothai Thammathirat Open University when they responded to a 20-page baseline questionnaire in 2005 (n= 87,151). A four and eight year follow-up were conducted with a response rate of approximately 70% at each follow-up (n=60,569 in 2009 and n=42,785 in 2013). At 2005 baseline, median age was 29 years, roughly half the sample were females, and approximately half were urban residents.

For mortality data linkage, all cohort members have provided their Citizen ID number which was matched with death records from the Thai Ministry of Interior and subsequently linked with causes of death from the Ministry of Public Health. Up until November 2016, there were a total of 1,401 deaths among the Thai Cohort Study participants.

Last update: 22/01/2017

The PICNICS study is an observational study tracking the progression of patients with incident Parkinson’s disease over several years to better understand how the disease behaves over time, and establish the pattern of evolution of subtypes of Parkinson’s disease. Understanding differences between subtypes and what drives them will inform development of stratified therapies. The study recruited patients with Parkinson’s disease between 2008 and 2013, and is following them up every 18 months with clinical assessments, cognitive assessments and biological sampling.

Last update – 16/01/2017