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LifeGene is a national collaborative project designed to build up a resource for research in all medical disciplines, enabling new and groundbreaking research on the relationships among heredity, environment and lifestyle. The study includes studying several hundred thousand Swedes with the aim of creating new tools to prevent, diagnose and treat our most common diseases. LifeGene constitutes a platform for a myriad of biomedical research projects. Researchers not only in biomedicine and biotechnology but also behavioral and social sciences may benefit from access to LifeGene. By combining a biological perspective with e-epidemiology, LifeGene opens up new possibilities for a greater understanding of the interplay between heredity, lifestyle and the environment as regards to our most common diseases.

ULSAM is a unique, ongoing, longitudinal, epidemiologic study based on all available men, born between 1920 and 1924, in Uppsala County, Sweden. The men were investigated at the ages of 50, 60, 70, 77, 82 88 and 93 years. The reinvestigations in ULSAM were based on the previous investigations. Full screening and official registry data is available in our databases and more data is continuously added.

Health examination at 93 years of age was carried out between December 2013 and March 2015. To this examination 245 men have been invited. Totally 147 men (60%) participated in the investigation. Of these, 23 men were examined at the hospital and 102 were visited at home by a nurse. In addition, 22 men completed only a questionnaire. To this examination even spouses were invited. In the complete examination 43 spouses have participated and 11 completed only a questionnaire.

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 1953–1985, consists of all children born in 1953 and living in the Stockholm metropolitan area in 1963. The second, The Swedish Work and Mortality Database 1980–2009 (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 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 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

STROKOG is a consortium of longitudinal studies of cognitive disorders following stroke, TIA or small vessel disease. Developed under the auspices of VASCOG (Society for the Study of Vascular Cognitive and Behavioural Disorders), it is the first international effort to harmonise work on post-stroke dementia and is being led by CHeBA researchers.

The consortium brings together studies that have examined post-stroke or other high vascular risk cohorts longitudinally, with cognitive decline and dementia (including sub-types) as primary outcome variables. The included studies (N=27; total sample of more than 10,000 individuals, representing 17 countries) have rich neuropsychological and MRI data, and some recent studies (n=3) have included amyloid imaging in sub-samples. A number of studies have CSF and/or plasma available for biomarker studies, and participant enrolment in brain banks for neuropathology.

Last Update 21/09/2017

This is the largest multi-centre study of ageing in men in the world and intends to identify the nature and frequency of some of the symptoms of ageing in men, the relationships between these symptoms to hormonal changes and other risk factors.

In total, 3369 men in 8 different countries in Europe are taking part in the study. These 8 centres are Manchester – UK, Malmo – Sweden, Tartu – Estonia, Lodz – Poland, Szeged – Hungary, Florence – Italy, Santiago de Compostela – Spain, Leuven – Belgium. In each centre, ~400 men aged between 40 and 79 years at the start of the study have been recruited. They will be followed up to look for future changes in their hormonal and general health status. The men will be investigated initially on two occasions, at the start and then ~5 years later. It is highly likely that the study will continue beyond 5 years and further testing will be organised subsequently. The aims of the study are to:

  1. Document geographical variations in the ageing-related involution decline of endocrine function in European men;
  2. Explain the variability in the rate of secular decline in endocrine functions on the basis of socio-demographic, lifestyle, co-morbid, ethnic/racial, or genetic factors;
  3. Predict the physical and psychological health status of individuals based on the variation in ageing-related endocrine decline and changes in body composition.

Last update – 24/04/2017

The European Prospective Investigation into Cancer and Nutrition (EPIC) is a prospective cohort with more than 521,000 study participants enrolled from 23 centres in 10 western European countries. Detailed information on diet, lifestyle characteristics, anthropometric measurements, and medical history was collected at recruitment (1992-1999).

Biological samples including plasma, serum, leukocytes, and erythrocytes were also collected at baseline from 387,889 individuals and are stored at the International Agency for Research on Cancer – World Health Organization (IARC-WHO) and mirrored at EPIC collaborating centres. Overall, the EPIC biorepositories host more than 9 million aliquots, constituting one of the largest biobanks in the world for biochemical and genetic investigations on cancer and other chronic diseases. Follow-up measures of lifestyle exposures have been collected and will be centralized at IARC in 2016.

Last update – 25/04/2017