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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

Between 1998 and 2002 the Survey team interviewed over 12,583 Southampton women aged 20 to 34 years. Those who became pregnant after interview were invited to take part in the pregnancy phase of the survey. Women received ultrasound scans at 11, 19 and 34 weeks of pregnancy, and their babies were measured soon after birth. There were 3,158 babies born to women in the study between 1998 and 2007. The survey has followed up these children with home visits at six months, one year, two and three years. A sample of over 1,000 children was seen at 4 years of age, more than 2,000 children at ages 6-7 years, and more than 1,000 at 8-9 years. Current follow-up of children at 11-13 years will continue for a number of years.

The aim is to learn more about the dietary,lifestyle, hormonal and omic factors that influence the health of women and their children.

Last Update 21/09/2017

The Irish Longitudinal Study on Ageing (TILDA) is a large-scale, nationally representative, longitudinal study on ageing in Ireland, the overarching aim of which is to make Ireland the best place in the world to grow old.
TILDA collects information on all aspects of health, economic and social circumstances from people aged 50 and over in a series of data collection waves once every two years. TILDA is unique amongst longitudinal studies in the breadth of physical, mental health and cognitive measures collected. This data, together with the extensive social and economic data, makes TILDA one of the most comprehensive research studies of its kind both in Europe and internationally.

Last Update 21/09/2017

BiB – Children
Recruitment Period: 2007-11
Sample size at start or planned sample size if still recruiting: 13,857
Estimated current sample size: 13,500
Age at recruitment: 0

BiB – Mothers
Start date: 2006-10
Sample size at start or planned sample size if still recruiting: 12,453
Estimated current sample size: 12,000
Age at recruitment: 15-49

BiB – Fathers
Start date: 2006-10
Sample size at start or planned sample size if still recruiting: 3,414
Estimated current sample size: 3,000
Age at recruitment: 16-60

Born in Bradford is a long term study of a population cohort of 13,500 children, born at Bradford Royal Infirmary between March 2007 and December 2010, whose health is being tracked from pregnancy through childhood and into adult life. The information collected from the BiB families is being used to find the causes of common childhood illnesses and to explore the mental and social development of this new generation.

The Born in Bradford cohort study offers a unique window of opportunity to initiate an innovative and multidisciplinary programme of research. By recruiting pregnant women, their partners and their newborn babies to the cohort, this study offers the potential to:

  • assess the determinants of childhood and adult disease
  • assess the impact of migration
  • explore the influences of pregnancy and childbirth on subsequent health
  • generate and test hypotheses that have the potential to improve health for some of the most disadvantaged within our society.

The Bradford community provides a unique setting for a birth cohort study exploring the determinants of childhood and adult disease because of its diversity of population and high levels of ill-health.

Last Update 21/09/2017

The Rhineland Study is a prospective cohort study, which began in March 2016. It will include up to 30,000 participants from Bonn and asses their physical and mental health over their lifespan. The study is scheduled to run for decades and participants will be re-examined every 3-4 years.

As neurodegenerative diseases and their pathologies develop over a long time before first symptoms start to show, the Rhineland Study will include men and women aged 30 years and above regardless of their health status.
The main aims of the study are:

1. To investigate modifiable and non-modifiable causes of neurodegenerative and neuropsychiatric diseases
2. To find biomarkers/(multimodal) biomarker profiles to identify individuals at risk for neurodegenerative or neuropsychiatric disease, who might benefit from preventive interventions
3. To investigate (patho)physiology over the adult life course, with specific emphasis on brain-related outcomes.

Last Update 21/09/2017

The Northern Finland Birth Cohort Studies is an epidemiological and longitudinal research program which aims to promote health and well-being of the population. The prospective data collected from the Northern Finland forms a unique resource, allowing to study the emergence of diseases which can be based on genetic, biological, social or behavioural risk factors.

NFBC includes two longitudinal and prospective birth cohorts of women and offspring collected at 20-year intervals from the same provinces of Oulu and Lapland: The NFBC1966 was set with an expected date of birth in 1966, comprising of 12,068 mothers and 12,231 children (prospective data collection from maternity cards since 16th gestational week on average), and the NFBC1986 with an expected date of birth between July, 1st 1985 and June, 30th 1986, comprising 9,362 mothers and 9,479 children (prospective data collection from 10th gestational week).

Last update – 02/05/2017

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

ADNI began in October 2004. The overall goal is to validate biomarkers for Alzheimer’s disease clinical trials. One aim is to find, validate and standardize more sensitive and accurate methods to detect Alzheimer’s disease at earlier stages and mark its progress through biomarkers. The study gathered and analyzed thousands of brain scans, genetic profiles, and biomarkers in blood and cerebrospinal fluid that are used to measure the progress of disease or the effects of treatment. More information on ADNI-info.org. All data is publically available at USC/LONI/ADNI.

The three overarching longitudinal ADNI study goals are:

  • Validation of biomarkers, especially for amyloid and tau, for use in AD clinical trials.
  • To detect Alzheimer’s disease (AD) at the earliest stage possible and identify ways to track the disease through biomarkers.
  • To support advances in AD intervention, prevention and treatment through the application of new diagnostic methods to apply at the earliest stages technically possible – when intervention may be most effective.
  • To continually develop ADNI’s now- legendary data access policy and continuously improve and expand the unprecedented data sharing model.

Last update – 07/02/2017

The overall goal was to establish a genetic-epidemiological database to shed light on the aging process among the extremely old, focusing on physical and cognitive functioning. In the first wave 2,262 Danes born in 1905 participated in a home-based 2-hour multidimensional interview, including cognitive and physical performance tests and collection of DNA, carried out by lay interviewers. Population-based registers were used to evaluate representativeness.

The first wave took place in 1998 and participants were followed-up in 2000 and 2003. In 2005 all the surviving birth cohort members were invited to participate irrespective of previous participation:

  • Wave 1: 2262 participants (1653 with biological sample)
  • Wave 2: 1086 participants
  • Wave 3: 437 participants
  • Wave 4: 256 participants

Last update – 30/01/2017

There are over 800,000 people with dementia in the UK today, and this figure is set to double in the next 30 years. Dementia has a huge impact on a person’s life and is one of society’s most urgent health and social care challenges. Despite this, treatment for dementia is very limited and there is no cure.

Human tissue is vital for dementia research but is currently in short supply and is not covered in standard organ donation schemes. With the support of Alzheimer’s Society and Alzheimer’s Research UK, Brains for Dementia Research was set up in 2007 to establish a network of brain bank facilities across England and Wales.

It is now a ‘gold standard’ for brain tissue banking, linking six leading centres (based in London, Oxford, Newcastle, Bristol, Manchester and Cardiff) in a network of common standards, best practice and cooperation. This lays the foundation to enable the highest quality dementia research, which aims to find a cure for dementia. In each bank, people with mild cognitive impairment or a diagnosis of dementia, and healthy participants, are supported to donate their brain by specialist research nurses.

This initiative is unique from other brain banks, as the memory, thinking and behaviour of each prospective donor are monitored throughout their later life through regular assessments. This provides researchers with a complete medical history to accompany the donated brain tissue, allowing them to see how brain changes correlate with symptoms.

Last update – 09/05/2018