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GENDER is a study of unlike-sex twin pairs born between 1906 and 1925 (Gold et al., 2002). A survey concerning health and health behavior was mailed in 1994 with responses from 1,210 twins from 605 pairs where both responded. Mean age at baseline questionnaire assessment was 74.43 (SD 4.28) and all are Caucasians. A baseline in-person evaluation of 498 twins from 249 pairs between 70 and 80 years of age was undertaken between 1995 and 1997, and included an interview and tests of cognitive and physical functioning. Two additional in-person waves followed at 4-year intervals. Finally, a second survey was mailed in 2007 to all living twins who participated in the first mailed survey.

Last update – 04/03/2017

The PATH Through Life project is a 20 year longitudinal cohort study of 7,485 young (aged 20-24 at baseline), midlife (aged 40-44 at baseline) and older (aged 60-64 at baseline) adults randomly sampled from the electoral roll of the Australian Capital Territory and the nearby city of Queanbeyan.
The original aims of the project are outlined below.

  • To delineate the course of depression, anxiety, substance use and cognitive ability with increasing age across the adult life span.
  • To identify environmental risk, genetic risk and protective factors influencing individual differences in the course of these characteristics.
  • To investigate interrelationships over time between the three domains of: depression and anxiety, substance use, and cognitive ability and dementia.
  • Data collection has occurred at four intervals (4 waves), at approximately four year intervals with a good participant retention rate. The fifth wave of data collection is commencing in 2017.
    Several design features of the PATH project contribute to its unique standing among population based longitudinal cohort studies.
  • Obtaining measures of genetic, biological (including MRI), psychosocial and lifestyle risk and protective factors for mental health and wellbeing.
  • Use of a narrow age cohort design with longitudinal follow ups as an optimal means of separating age and cohort effects.
  • Assessment of participants across the full adult lifespan, permitting investigation of developmentally significant, but under studied periods such as midlife
  • Recruitment and follow up of a young-old population, providing important pre-clinical data for studying the development of age related changes in memory and cognition.

Last update – 12/01/2017

The PREVENT Research Programme has established a cohort of individuals to explore differences in the brain and cognitive function in healthy people in mid-life (aged 40-59). People are grouped into high, mid and low risk based on their family history and APOE status (a well-known risk gene for Alzheimer’s disease).

650 participants are assessed on biological indicators including markers in blood, saliva, urine and spinal fluid as well as direct imaging of the brain’s structure and function. Changes in all of these markers will be monitored at 2 years to work out if risks that predict these changes. One of the main aims of the study is to identify the earliest signs of changes in the brain whilst people are still in good health.

Last update – 13/12/2017

Based at the University of Bristol, the Avon Longitudinal Study of Parents and Children (ALSPAC), also known as Children of the 90s, is a world-leading birth cohort study. Between April 1991 and December 1992 more than 14,000 pregnant women were recruited into the study and these women (some of whom had two pregnancies or multiple births during the recruitment period), the children arising from the pregnancy, and their partners have been followed up over two decades.

The cohort has been followed intensively with annual questionnaires for the mothers, fathers and the children from age 5. A 10% sample of children were seen 10 times between 4 and 61 months for clinic assessment. Annual clinic assessment of the whole cohort was conducted from the age of 7 to 13 and 15 to 17. Assessment at age 24/25 is currently planned.

Record linkage has been completed for Education, Hospital Episode Statistics, Clinical Practice Research Datalink and Death notification and cancer cases.

1 million biological samples are held including maternal blood and urine, umbilical cord blood, placentas, paternal blood and saliva and children’s blood, saliva and urine.

The study has been extended to include grandparents, siblings, and children of the children and recruitment is underway.

ALSPAC is part of CLOSER (Cohort & Longitudinal Studies Enhancement Resources) which aims to maximise the use, value and impact of the UK’s longitudinal studies.

Last update: 12/01/2017

The Busselton Healthy Ageing Study aims to enhance understanding of ageing by relating the clustering and interactions of common chronic conditions in adults to function. Phase I (recruitment) is a cross-sectional community-based prospective cohort study involving 5,107 ‘Baby Boomers’ (born from 1946 to 1964) living in the Busselton Shire, Western Australia. The study protocol involves a detailed, self-administered health and risk factor questionnaire and a range of physical assessments including body composition and bone density measurements, cardiovascular profiling (blood pressure, ECG and brachial pulse wave velocity), retinal photography, tonometry, auto-refraction, spirometry and bronchodilator responsiveness, skin allergy prick tests, sleep apnoea screening, tympanometry and audiometry, grip strength, mobility, balance and leg extensor strength. Cognitive function and reserve, semantic memory, and pre-morbid intelligence are assessed. Phase 2 (longitudinal, 6 year follow-up) commenced in 2016.

Last update: 25/01/2017

The Cambridge City over-75s Cohort Study (CC75C) is a long-term follow-up study of a representative population-based sample of older people which started in 1985 from a survey of over 2,600 men and women aged 75 and above. Through a series of interviews and assessments spanning almost three decades they have contributed to one of the largest and longest-running longitudinal observational studies of ageing into older old age.
The initial study targeted all men and women aged 75 or older who were registered within a selection of geographically and socially representative general practices in Cambridge, and achieved a 95% response rate in six of the seven practices. From this original survey of 2610 people, 2166 individuals form the baseline sample for the longitudinal cohort. This group has been followed up through ten surveys, with sub-groups assessed more often. Similarly high response rates amongst participants still alive in their late 80s or 90s, and even amongst centenarians, have built an extensive resource of quantitative and qualitative data contributed by a representative sample of very old people and their relatives.
The focus in later years shifted to quality of life issues of ‘older old’ people near the end of life for which we have been interviewing relatives or carers of surviving members of the cohort all aged 95 or more, as well as these study participants themselves.

Last update: 05/01//2017

MRC CFAS study started in the late 1980s with the initial aim of investigating dementia and cognitive decline in a representative sample of more than 18,000 people aged over 65 years. To date there have been in the region of 48,000 interviews with participants in the study. The range of information collected has also allowed the study to investigate depression and physical disability in the older population and also look at healthy active life expectancy. Following baseline interviews, subsets of the cohort have been contacted for 1, 2, 6 and 8 year follow up and the whole sample were contacted for a 10 year follow up. There have also been in excess of 580 donations of participant’s brains after death.

CFAS is part of the Dementias Platform UK (DPUK), a multi-million pound public-private partnership to accelerate progress in dementias research http://www.mrc.ac.uk/research/facilities/dementias-platform-uk/

There is a sister study CFAS II which builds on the design and infrastructure of MRC CFAS. It has provided data on generational and geographical differences including people in institutions. CFAS I is the original three sites (Cambridge, Newcastle and Nottingham) from MRC CFAS which are used as a comparitor for CFAS II.

Last update: 13/01/2017

CFAS II based in England and Wales started in 2008, and builds on the design and infrastructure of original CFAS. It has provided data on generational and geographical differences including people in institutions. It will also provide important base-line information on older people aged 65-84 in 2007-2008 who will reach the age of greatest frailty during the 2020s when the peak in the number of people aged 85 or over is expected and at a time when major therapeutic interventions for dementia could be expected to have an effect. Participants were followed up by interview throughout 2010-2011.

CFAS II is part of the Dementias Platform UK (DPUK), a multi-million pound public-private partnership to accelerate progress in dementias research http://www.mrc.ac.uk/research/facilities/dementias-platform-uk/

Last update: 13/01/2017

The primary objective of the English Longitudinal Study of Ageing (ELSA) is to collect longitudinal multidisciplinary data from a representative sample of the English population aged 50 and older. It began in 2002 and recruited over 12,000 people.

The study collects both objective and subjective data relating to health and disability, biological markers of disease, economic circumstance, social participation, networks and well-being. ELSA aims to measure outcomes across a wide range of domains and to provide high-quality multidisciplinary data that can shed light on the causes and consequences of outcomes of interest.

There have been seven sweeps of data collection 2002-03, 2004-05, 2006-07, 2008-09, 2010-11, 2012-2013, 2014-2015 and an eighth sweep (2016-2017) is currently underway.

The survey data are designed to be used for the investigation of a broad set of topics relevant to understanding the ageing process. These include:

  • health trajectories, disability and healthy life expectancy;
  • the determinants of economic position in older age;
  • the links between economic position, physical health, cognition and mental health;
  • the nature and timing of retirement and post-retirement labour market activity;
  • household and family structure, social networks and social supports;
  • patterns, determinants and consequences of social, civic and cultural participation;
  • predictors of well-being.

ELSA is part of the Dementias Platform UK (DPUK), a multi-million pound public-private partnership to accelerate progress in dementias research.

Last update: 13/01/2017

The Norfolk component of the European Prospective Investigation of Cancer (EPIC) recruited over 30,000 people from 1993 to 2000. EPIC-Norfolk participants are men and women who were aged between 40 and 79 when they joined the study and who lived in Norwich and the surrounding towns and rural areas. They have been contributing information about their diet, lifestyle and health through questionnaires and health checks over two decades.

Following baseline data collection the cohort has been followed up at 18 months by questionnaire, 3 years (1997-2000) – second health check and questionnaire, 10 years – health questionnaire , 13 years (2006-2011) – third Health examination and questionnaire.

The primary aim of the ten country half a million international EPIC collaboration is to examine the relationships between diet and incident cancers; that is, cancers which have developed after they joined the study. This broadened to include lifestyle and genetic factors and other diseases

A secondary aim is to study the relationship between dietary intake and other diseases and disease risk factors. In EPIC-Norfolk, these include heart attacks and strokes, rheumatoid arthritis, diabetes, thyroid disease, osteoporosis, dementia, eye diseases and many others. We are also studying the link between disease and other factors, such as psychosocial health.

EPIC Norfolk is part of the Dementias Platform UK (DPUK), a multi-million pound public-private partnership to accelerate progress in dementias research.

Last update: 07/12/2017