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A family-based cohort study that is embedded in the Genetic Research in Isolated Populations (GRIP) program in the South West of the Netherlands. The aim of this program was to identify genetic risk factors in the development of complex disorders. For the ERF study, 22 families that had at least five children baptized in the community church between 1850-1900 were identified with the help of genealogical records. All living descendants of these couples and their spouses were invited to take part in the study. Data collection started in June 2002 and was finished in February 2005 (n=2065).

Convenience sample of centenarians, their siblings, offspring, spouses and a control sample consisting of people born around same time as offspring but who do not have parents surviving beyond average life expectancy for their birth cohort. Age range 40-119 years, with ~2500 centenarians in the sample including 600 semi-supercentenarians (ages 105-109) and 200 supercentenarians (ages 110+ years).

We collect the below listed data at enrolment and then collect vital status, hospitalization, changes in meds and diagnoses, cognitive function (TICS) and physical function (IADS, ADL) over the phone, annually. Local subjects are asked to undergo annual detailed cognitive function testing in person with ultimately, brain donation. Blood sample collected at enrolment for DNA, RNA and plasma for biomarkers and storage.

Study is open to collaborations. Please contact Dr. Perls

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.

UK Biobank is a major national health resource, and a registered charity in its own right, with the aim of improving the prevention, diagnosis and treatment of a wide range of serious and life-threatening illnesses – including cancer, heart diseases, stroke, diabetes, arthritis, osteoporosis, eye disorders, depression and forms of dementia.

500,000 people aged between 40-69 years were recruited in 2006-2010 from across the country to take part in this project. They have undergone measures, provided blood, urine and saliva samples for future analysis, detailed information about themselves and agreed to have their health followed. The cohort is primarily followed through data linkage but the cohort was re-contacted in 2012-13 with a further 100,000 to be approached over the next few years.

TRACK-HD was a prospective observational biomarker study in participants with premanifest and early Huntington’s disease (HD). Track-HD assessed longitudinal data collected at baseline, 12 months, 24 and 36 months at sites in Leiden (Netherlands), London (UK), Paris (France), and Vancouver (Canada). Participants were individuals without HD but carrying the mutant HTT gene (ie, premanifest HD), patients with early HD, and healthy control individuals matched by age and sex to the combined HD groups. Data were collected with 3T MRI, clinical, cognitive, quantitative motor, oculomotor, and neuropsychiatric assessments. TrackOn-HD followed on from TRACK-HD aiming to investigate compensatory mechanisms in premanifest gene carriers. Baseline, 12 and 24 month data was collected from the same four sites on premanifest gene carriers and healthy controls including 3T MRI, task and resting state fMRI, DTI, clinical, cognitive, quantitative motor and neuropsychiatric assessments.

Last update – 11/04/2017