Archives

The ZARADEMP project (ZARAgoza DEMentia
DEPression project) was designed as a longitudinal,
community-based study to examine the incidence
of dementia and the risk factors in incident cases of
dementia. It was carried out in Zaragoza, a typical,
large city in Spain, with an important proportion
of inhabitants coming from surrounding rural
areas (12). A stratified random sample of individuals
55 years of age and older, with proportional
allocation by age and sex, drawn from the eligible
individuals (n = 157 787) in the Spanish official
census lists of 1991, was invited to participate in
the baseline examination.

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 Prospective Epidemiological Risk Factor (PERF) Study is an ambidirectional population-based study of postmenopausal women set up with the purpose of obtaining a better understanding of the aetiology and pathogenesis of age-related diseases. Participants were recruited from a source population of 8875 women residing in Denmark. The baseline examination (PERF I) comprised 5855 women with mean age of 70.8 years (49.7-88.8) and took place between 1999 and 2001. All subjects have been followed up with registry linkage using population-based national registries. Further, a subcohort was re-invited to attend a follow-up visit between 2013 and 2014 (PERF II). Registry data are available for all baseline participants. From the baseline population, 2103 were enrolled in PERF II.

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 is a feasibility study which has a Longitudinal Cohort design, following up participants at selected time points over a 1 year duration. The study will recruit 2 distinct groups: (1) patients with symptoms of cognitive impairment, and (2) study partners who are cognitively normal. The patients recruited to group 1 will have been recently referred to a Memory Assessment Service by their GP with suspected Mild Cognitive Impairment (MCI) & mild dementia. All patients referred to a Memory Assessment Service for this reason will be potentially eligible for inclusion in the study. Close friends or family members involved in looking after the cognitively impaired participants will also be asked to participate as study partners to attempt to measure the impact that looking after a partner, friend or family member with memory problems can have on a carer’s Quality of Life and other variables such as financial burden. Both cognitively impaired participants and their study partners will be given the option of additionally participating in two sub-studies:

– Mobile data collection: Using a web/mobile app to collect self-reported data on a more regular basis from home

– Wearable device: Using a wearable device that looks like a watch to collect information on activity and sleep

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 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 EADC-PET project (EAPP, The European Alzheimer’s Disease Consortium PET project) is a spontaneous multicentric study (ProtocolDraftSep2008; ProtocolDraftFeb2009) involving at the moment five Centres in four Countries (CENTRES), belonging to the EADC consortium. It was launched during the EADC meeting in Amsterdam, during fall 2007, by Flavio Nobili (Genoa) who is the Principal Investigator.

The project aims at sharing FDG-PET, MRI, neuropsychological, genetic, EEG and clinical information of patients with amnestic Mild Cognitive Impairment (aMCI) and matched healthy controls. Information is uploaded in a safe FTP facility on the server of University of Genoa. Username and password have been provided to all participants. Use of data is regulated by a ‘Confidentiality Disclosure Agreement’ that can be downloaded from this web site (Confidential_Disclosure_Agreement). The Centres propose original studies by sending a formal proposal to all participants who can agree or disagree, or propose modifications/suggestions to the original proposal.

The objective is to follow-up aMCI patients with clinical and neuropsychological examinations to pick up conversion to Alzheimer’s dementia or to other forms of dementia. FDG-PET can be analyzed by means of several post-processing strategies to highlight glucose metabolic information and to identify the characteristics of what is today called ‘prodromal’ AD.

Last Update 21/09/2017

The aim of the Alfa Study is to focus on the processes taking place before the initiation of Alzheimer’s symptoms in order to design interventions to prevent or delay the onset of dementia. Inclusion criteria were being cognitively normal Spanish and/or Catalan-speaking persons aged between 45 and 74 years that agreed with the study procedures and tests: clinical interview and questionnaires associated to risk factors, cognitive tests, a blood sample extraction for DNA analysis, and MRI.

A subset (n=450) of the ALFA parent cohort participants are currently being recruited / undergoing a nested longitudinal long-term study, named the ALFA+ study, in which a more detailed phenotyping will be performed. On top of a similar characterization as in the ALFA parent cohort, it will entail the acquisition of both wet (CSF, blood, and urine sample collection) and imaging (magnetic resonance imaging [MRI] and PET) biomarkers. Furthermore, ALFA parent cohort participants may also be invited to participate in other BBRC studies such the ALFAlife primary intervention study (n=400) or the full genetic and neuroimaging characterisation study referred to as ALFAgenetics (n=2000).

Last Update 21/09/2017

The aim of RISCA is to answer the following questions:

  1. What is the incidence of disease manifestation in mutation carriers?
  2. Which clinical signs precede the onset of manifest ataxia in SCA1, SCA2, SCA3 and SCA6?
  3. What are the prevalence and incidence of preceding signs?
  4. Are the prevalence and incidence of preceding signs affected by genotype, gender, age, estimated time until disease manifestation and repeat length?
  5. Does the presence of certain preceding signs predict the manifestation of ataxia?
  6. Are there MRI alterations that precede the onset of ataxia?

Study participants are followed at 24 months intervals over six years and than at irregular intervals. At each visit, study participants are asked in a structured interview for a number of predefined clinical signs that potentially precede the onset of ataxia.

Last update – 26/05/2017