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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.

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

A population-based prospective study of cerebro-cardiovascular diseases was begun in 1961 in the town of Hisayama, a suburb of the Fukuoka metropolitan area of Kyushu Island in Japan. In addition, comprehensive surveys of cognitive impairment in the elderly of this town have been conducted since 1985. In 1988, a total of 1,228 residents aged ?60 years (91.1% of the total population in this age group) participated in a screening examination for the present study. After exclusion of 33 subjects who had dementia, 90 who had already had breakfast, 5 who were on insulin therapy, and 81 who could not complete the OGTT, a total of 1,019 subjects without dementia underwent the OGTT. From a total of 1,019 subjects, 2 who died before starting follow-up were excluded, and the remaining 1,017 subjects (437 men and 580 women) were enrolled in this study.

The subjects were followed up prospectively for 15 years, from December 1988 to November 2003 (mean 10.9 years; SD 4.1 years).

Since 1993 the EAS has used systematic recruiting methods to assemble a cohort of over 2,200 elderly individuals from the Bronx, 26% of whom are African American. The EAS sample is broadly representative of the elderly population in one of the poorest and most racially and ethnically diverse urban counties in the United States.

The EAS has developed, tested, and applied strategies designed to meet the recruitment and retention challenges that may arise when conducting research studies with older adults. In 2004, the EAS began using the Registered Voter Lists (RVL) for Bronx County for continuous recruitment efforts. Individuals of at least 70 years of age, Bronx residents, non-institutionalized and English speaking are randomly selected from updated RVL and sent a letter followed by a screening telephone call. Persons who complete the telephone screening battery and agree to participate in clinical follow-up are invited to enroll. Continuing enrollment has resulted in over 2200 participants by 2017.

The Vallecas Project is developed in the Research Unit of the Alzheimer’s Center of the Reina Sofía Foundation by researchers of the CIEN Foundation. Its main objective is to determine a probabilistic algorithm for the identification of individuals at risk of dementia type Alzheimer’s disease (AD) in the course of a few years. This algorithm will be based on the combination of sociodemographic, clinical, neurological, neuropsychological, biological (from blood determinations) and neuroimaging (various 3 Tesla magnetic resonance modalities).

The recruitment phase of the Vallecas Project participants was extended from October 2011 to December 2013. Finally, a total of 1,213 volunteers aged between 70 and 85 and of both sexes were initially evaluated. Once included in the study, it is monitored annually for 5 years in order to assess the evolutionary profile of all participants, specifically identifying those who develop cognitive impairment and / or dementia. The cohort is being followed up annually for 4 years after the baseline.

The Mayo Clinic Study of Aging was designed to establish a prospective population-based cohort of subjects to study prevalence, incidence and risk factors for MCI and dementia. The study was conducted in Olmsted County, where several factors enhance the feasibility of population-based epidemiologic research. Most residents seek care within the community from essentially 2 providers, the Mayo Clinic and Olmsted Medical Center, along with their affiliated hospitals and medical facilities within the county. Both healthcare providers use a unit medical record which includes all outpatient and inpatient information for each patient. The study began October 1, 2004, and recruitment is ongoing to maintain a sample size of about 3,000 active participants. Participants are randomly selected from the Olmsted County population using a sex and age-stratified sampling scheme. Selected participants are invited to participate; exclusion criteria are persons who are in hospice or terminally ill or demented, but recruitment of persons with dementia began in 2015. Nearly 6,000 participants have been recruited to date. At the onset of the study, only 70-89 year olds were eligible. Recruitment of 50-69 year-olds began in 2012, and recruitment of 30-49 year olds began in 2014. Followup is performed every 15 months for 50 yrs and older; every 30 months if younger than 50 years by face-to-face visits in the Center, in-home, or by phone for a minority who decline either of the two but still would like to participate. Medical records are reviewed is used to identify prevalent and incident medical conditions (e.g. vascular diseases such as diabetes, hypertension) and incident dementia cases among persons lost to follow-up.

The Lifelines Cohort Study is a large population-based cohort study and biobank that was established as a resource for research on complex interactions between environmental, phenotypic and genomic factors in the development of chronic diseases and healthy ageing. The Lifelines cohort distinguishes a children’s cohort (aged 0-18), an adult cohort (aged 18-65) and the elderly cohort (aged 65+). The protocol for these three sub-cohorts is largely the same, but focuses in part on the characteristics of the specific participant groups.

Between 2006 and 2013, inhabitants of the northern part of The Netherlands and their families were invited to participate, thereby contributing to a three-generation design. Follow-up visits are scheduled every 5 years, and in between participants receive follow-up questionnaires. Linkage is being established with medical registries and environmental data. Lifelines contains information on biochemistry, medical history, psychosocial characteristics, lifestyle and more. Genomic data are available including genome-wide genetic data of 15638 participants. Fasting blood and 24-h urine samples are processed on the day of collection and stored at -80 °C in a fully automated storage facility. The aim of Lifelines is to be a resource for the national and international scientific community. Requests for data and biomaterials can be submitted to the Lifelines Research Office ([email protected]).

Dementia with Lewy Bodies (DLB) is the second most common cause of neurodegenerative dementia in older people. The aim of LewyPro is to examine and characterise symptoms and brain changes during the prodromal period of LBD. Earlier diagnosis is important because it facilitates care planning, leads to earlier treatment of cognitive symptoms and enables earlier identification of other symptoms, including parkinsonism.

Lewy Pro is recruiting a group of people with mild cognitive impairment (MCI) and prodromal symptoms suggestive of Dementia with Lewy Bodies (DLB) and following them up annually to assess biomarker changes and clinical course. The initial assessment will include a detailed clinical assessment, a blood sample, a lumbar puncture for cerebrospinal fluid, and a DaTSCAN.

Last Update 21/09/2017

The ADC was setup in 2004 by including all patients who come to the Alzheimer Center for diagnostic work up and who consent to give all data, collected as part of the routine diagnostic work up, for research. The aim is and was to facilitate research into new and existing biomarkers in the broadest sense, to establish diagnostic, prognostic and theragnostic values and further insight into the pathogenesis of neurodegenerative dementias. The data are collected on a weekly basis and consist of baseline data and annual follow up data. Since it is conception it has grown into one of the largest clinical databases in the dementia field. More info on setup, characteristics and data collection can be found in van der Flier WM, Pijnenburg YA, Prins N, Lemstra AW, Bouwman FH, Teunissen CE, van Berckel BN, Stam CJ, Barkhof F, Visser PJ, van Egmond E, Scheltens P.

Optimizing patient care and research: the Amsterdam Dementia Cohort. J Alzheimers Dis. 2014;41(1):313-27. doi: 10.3233/JAD-132306. PubMed PMID: 24614907.

Last Update 21/09/2017

The Sydney Centenarian Study is an ongoing project that has established a representative cohort of very elderly Australians. It has provided evidence that dementia is not inevitable at this age and that independent living is common. The data collected to date provides an excellent resource to explore the genetic and environmental factors that contribute to long life and successful cognitive aging. The study is ongoing and actively recruiting, with numerous publications in preparation.

Last Update 21/09/2017