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Tracking Parkinson’s, or the PRoBaND study, is a UK-based study of Parkinson’s disease funded entirely by Parkinson’s UK.

There is a wide variation of symptoms and features of Parkinson’s driven by both genetic and external factors. Our study aims to define and explain these variations by analysing the clinical expression of Parkinson’s in relation to genotypic variation. Tracking Parkinson’s is a multi-centre prospective longitudinal study, informed by epidemiological and biomarker data.

Participants were recruited into three categories:

Recent onset patients (diagnosed within the last three years) are followed up at 6-month intervals for four years, then every 18-months for a further three years.
Early onset (patients diagnosed before the age of 50) were followed up at one year.
Relatives (siblings) of the participants are followed up after three years.

Since 2012, we have been running at 70 sites across the UK. Recruitment closed in November 2017 and our cohort consists of 2,270 people with Parkinson’s and 344 of their siblings.

NHS Greater Glasgow & Clyde is the study Sponsor and the coordinating study centre is based at the Institute of Neuroscience & Psychology at the University of Glasgow in Scotland.

In 1999 the Swedish Ministry for Social Affairs promoted and supported a national project aimed at monitoring and evaluating the care-of-the-elderly system in Sweden. To achieve these aims, four longitudinal individual-based data collection describing the aging process and encompassing the care system as whole, has been initiated. This project was named The Swedish National study on Aging and Care (SNAC).

SNAC-K is conducted by the Stockholm Gerontology Research Center in collaboration with Aging Research Center (ARC), Karolinska Institutet.

SNAC-K includes two studies: SNAC-K population study and SNAC-K care system study.

The Stockholm Birth Cohort Study (SBC) was created in 2004/2005 by a probability matching of two comprehensive and longitudinal datasets. The first, the Stockholm Metropolitan study 19531985, consists of all children born in 1953 and living in the Stockholm metropolitan area in 1963. The second, The Swedish Work and Mortality Database 19802009 (WMD), consists of all individuals living in Sweden in 1980 or 1990, and born before 1985. The initiative to create the database was taken by Denny Vågerö at the Centre for Health Equity Studies, CHESS, of Stockholm University/Karolinska Institute and Sten-Åke Stenberg at the Swedish Institute for Social Research, Stockholm University (SOFI). The resulting database provides a 50-year long follow-up of the original 1953 birth cohort.

The Kungsholmen Project is a longitudinal population-based study on ageing and dementia, carried out by the Stockholm Gerontology Research Center in collaboration with Aging Research Center (ARC), Karolinska Institutet.

The project, which started in 1987, has gathered a 12-year long database and offers information on aging from a multidisciplinary perspective. All persons that were born before 1913 and lived in the Kungsholmen district of Stockholm, were invited to participate (a total of 2368 persons on October 1st, 1987, including both community-dwelling and institutionalized persons). Later, the research additionally included all 90+ old subjects living in the St. Göran parish, an adjacent geographical area. The baseline phase and four follow-ups have been completed, with the last phase concluding in the summer of 2000. Time 1 was the only measurement occasion when a two-phase study design was adopted, with an extensive clinical examination performed after a screening phase. At every other occasion, all participants were interviewed by nurses, clinically examined by physicians, and assessed by psychologists.

The original study (1969-73) had five main objectives: (i) to study the relationship of birth weight (BW) and gestational age (GA) to infant mortality and the incidence of congenital defects; (ii) to study maternal blood pressure before and during pregnancy and the incidence of toxaemia; (iii) to assess the effects of parental consanguinity on reproductive outcomes; (iv) to examine the impact of family planning programmes on fertility and (v) to estimate rates of foetal loss, and neonatal, infant and early childhood mortality.1 The subsequent follow-up studies focused on the effects of prenatal factors BW and GA on physical growth and development and mortality during childhood and adolescence.

For the follow-up in young adulthood (1998-2002), the main objective was to study glucose tolerance, insulin resistance and insulin secretion and a range of cardiovascular risk factors (body composition, blood pressure and plasma lipid concentrations) in relation to parental size, neonatal size and childhood growth.

The Uppsala Birth Cohort Multigeneration Study (UBCoS) started in 2005 when we were first able to combine existing data on a representative and well-defined cohort of 14,192 males and females born in Uppsala from 1915-1929 (the Uppsala Birth Cohort: UBCoS) with information on descendants of the original cohort members obtained from routine registers.

In 2007-2011, the study was further developed by additional data collection in school archives and records from Census 1930 and the period of follow-up was extended till end of year 2009.

The study is unique in investigating intergenerational effects as “forward in time” processes, starting at the beginning of the last century (i.e. well before any of the routine registers were in place). Intergenerational associations can be currently investigated in more than 140,000 study subjects from families spanning up to five generations, including the 14,192 original cohort members, their 22,559 children, 38,771 grandchildren and 25,471 great grandchildren born up to 2009.

The Prospective Epidemiological Risk Factor (PERF) Study is an ambidirectional population-based study of postmenopausal women set up with the purpose of obtaining a better understanding of the aetiology and pathogenesis of age-related diseases. Participants were recruited from a source population of 8875 women residing in Denmark. The baseline examination (PERF I) comprised 5855 women with mean age of 70.8 years (49.7-88.8) and took place between 1999 and 2001. All subjects have been followed up with registry linkage using population-based national registries. Further, a subcohort was re-invited to attend a follow-up visit between 2013 and 2014 (PERF II). Registry data are available for all baseline participants. From the baseline population, 2103 were enrolled in PERF II.

The Scottish Health Survey (SHeS) provides a detailed picture of the health of the Scottish population in private households and is designed to make a major contribution to the monitoring of health in Scotland.
The series aims to:
estimate the occurrence of particular health conditions
estimate the prevalence of certain risk factors associated with health
look at differences between regions and between subgroups of the population
monitor trends in the population’s health over time
make a major contribution to monitoring progress towards health targets

The Limache cohort was set up to assess the programming and life course events hypotheses in relation to cardiovascular risk factors and chronic respiratory conditions, especially asthma, in the context of an unprecedented economic growth in Chile. The cohort was a representative sample of 1,232 participants born between 1974 and 1978 in the hospital of Limache. The study includes data collected at birth, during the 1st year of life, at 22 to 28 years (collected between 2000 and 2002) and at 32 to 38 years (collected between 2010 and 2012).

This was possible because details were collected for all births in the country including duration of gestation, birthweight and birth length. Limache, a semirural agricultural area relatively near Santiago and close to Viña del Mar and Valparaíso, was chosen because: a birth register in the hospital has been kept since the 1970s; paediatric clinical records were kept in the local hospital ; and there was demographic information that emigration from this area was low so that we would be able to find most participants born in the 1970s still living in Limache and in Olmué, a neighbouring area.

The Maastricht Study is an extensive phenotyping study that focuses on the etiology of type 2 diabetes, its classic complications (cardiovascular disease, nephropathy, neuropathy and retinopathy), and its emerging comorbidities, including cognitive decline, depression, and gastrointestinal, respiratory and musculoskeletal diseases. The study uses advanced state-of-the-art imaging techniques and extensive biobanking to determine health status in a population-based cohort of 10,000 individuals that is enriched with type 2 diabetes participants. The Maastricht Study is expected to become one of the most extensive phenotyping studies in both the general population and type 2 diabetes participants worldwide.

The Maastricht Study allows researchers access to data to encourage publications of high quality papers and presentations. External researchers (those without an MUMC or UM affiliation) can only submit a research proposal in cooperation with a member of the Maastricht Study Management Team and/or Maastricht Study Participating researchers.