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The study is a prospective cohort study that included 400 subjects with MCI enrolled in at Huashan Hospital in Shanghai, China and a followed-up once annually for three years. The objectives are to identify individuals with MCI who convert to AD and to explore factors associated with the conversion. The observation time point is every 12 months and phone interview on 6th, 18th month. The primary endpoint was the time from diagnosis to the conversion from MCI to Probable AD Dementia. The secondary endpoints are the time to conversion from MCI to “Possible AD Dementia” or “Probable AD Dementia”, time to Conversion from MCI to “All-cause Dementia”, Overall survival, Changes in Neuropsychological examinations and Changes in MRI from baseline to the end of follow-up. The planned research duration was from Jan 2012 to Dec 2016.

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).

Tracking Parkinson’s, or the PRoBaND study, is a UK-based study of Parkinson’s disease funded entirely by Parkinson’s UK.

There is a wide variation of symptoms and features of Parkinson’s driven by both genetic and external factors.  Our study aims to define and explain these variations by analysing the clinical expression of Parkinson’s in relation to genotypic variation. Tracking Parkinson’s is a multi-centre prospective longitudinal study, informed by epidemiological and biomarker data.

Participants were recruited into three categories:

  • Recent onset patients (diagnosed within the last three years) are followed up at 6-month intervals for four years, then every 18-months for a further three years.
  • Early onset (patients diagnosed before the age of 50) were followed up at one year.
  • Relatives (siblings) of the participants are followed up after three years.

Since 2012, we have been running at 70 sites across the UK.  Recruitment closed in November 2017 and our cohort consists of 2,270 people with Parkinson’s and 344 of their siblings.

NHS Greater Glasgow & Clyde is the study Sponsor and the coordinating study centre is based at the Institute of Neuroscience & Psychology at the University of Glasgow in Scotland.

The Maastricht Study is an extensive phenotyping study that focuses on the etiology of type 2 diabetes, its classic complications (cardiovascular disease, nephropathy, neuropathy and retinopathy), and its emerging comorbidities, including cognitive decline, depression, and gastrointestinal, respiratory and musculoskeletal diseases. The study uses advanced state-of-the-art imaging techniques and extensive biobanking to determine health status in a population-based cohort of 10,000 individuals that is enriched with type 2 diabetes participants. The Maastricht Study is expected to become one of the most extensive phenotyping studies in both the general population and type 2 diabetes participants worldwide.

The Maastricht Study allows researchers access to data to encourage publications of high quality papers and presentations. External researchers (those without an MUMC or UM affiliation) can only submit a research proposal in cooperation with a member of the Maastricht Study Management Team and/or Maastricht Study Participating researchers.

The LRRK2 Cohort Consortium (LCC) comprises three closed studies: the LRRK2 Cross-sectional Study, LRRK2 Longitudinal Study and the 23andMe Blood Collection Study. The LCC followed standardized data acquisition protocols, and clinical data and biological samples are stored in a comprehensive Parkinson’s database and biorepository, respectively. A total of 1,213 Idiopathic PD subjects, 1,168 PD subjects with genetic mutations in LRRK2, 1,123 unaffected subjects with genetic mutations in LRRK2, and 779 Healthy Controls (HC) were recruited.

The Parkinson’s Progression Marker Initiative (PPMI) is an observational, international study designed to establish biomarker defined cohorts and identify clinical, imaging, genetic and biospecimen Parkinson’s disease (PD) progression markers to accelerate disease modifying therapeutic trials. A total of 423 untreated PD, 196 Healthy Control (HC), 64 SWEDD (scans without evidence of dopaminergic deficit) subjects, and 65 Prodromal subjects (individuals with hyposmia or REM Sleep Behavior Disorder) were enrolled. PPMI is actively enrolling affected and unaffected individuals with genetic mutations in LRRK2, GBA, or SNCA through the end of 2018. For the most up to date enrollment numbers, please visit http://www.ppmi-info.org/study-design/study-cohorts/. To enroll PD subjects as early as possible following diagnosis, subjects were eligible with only asymmetric bradykinesia or tremor plus a dopamine transporter (DAT) binding deficit on SPECT imaging. Acquisition of data was standardized as detailed at www.ppmi-info.org.

This project comprises of two complementary parts. One part is aimed at the development of innovative diagnostic techniques to detect molecular signatures of AD based on disturbances of amyloid metabolism and glutamate neurotransmission. In this part, the focus is on the two most promising diagnostic approaches in AD: (molecular) imaging techniques and molecular diagnostic tests of CSF. In the second part of this study, techniques for which proof-of-concept has been found in humans are applied in a large group of AD patients. These patients are recruited in an established network of 4 collaborating memory clinics in The Netherlands, which use a standardized diagnostic protocol and share an extensive common database. Furthermore, more mature molecular, structural, and functional imaging and molecular diagnostic CSF techniques as well as the conventional diagnostic work-up will be applied from the start of the study in patients from the same network of memory clinics.

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 Open Access Series of Imaging Studies (OASIS) is a project aimed at making MRI data sets of the brain freely available to the scientific community.

OASIS: Cross-sectional MRI Data in Young, Middle Aged, Nondemented and Demented Older Adults
This set consists of a cross-sectional collection of 416 subjects aged 18 to 96. For each subject, 3 or 4 individual T1-weighted MRI scans obtained in single scan sessions are included. The subjects are all right-handed and include both men and women. 100 of the included subjects over the age of 60 have been clinically diagnosed with very mild to moderate Alzheimer’s disease (AD). Additionally, a reliability data set is included containing 20 nondemented subjects imaged on a subsequent visit within 90 days of their initial session.

OASIS: Longitudinal MRI Data in Nondemented and Demented Older Adults
This set consists of a longitudinal collection of 150 subjects aged 60 to 96. Each subject was scanned on two or more visits, separated by at least one year for a total of 373 imaging sessions. For each subject, 3 or 4 individual T1-weighted MRI scans obtained in single scan sessions are included. The subjects are all right-handed and include both men and women. 72 of the subjects were characterized as nondemented throughout the study. 64 of the included subjects were characterized as demented at the time of their initial visits and remained so for subsequent scans, including 51 individuals with mild to moderate Alzheimer’s disease. Another 14 subjects were characterized as nondemented at the time of their initial visit and were subsequently characterized as demented at a later visit.

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