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The rpAD study is a longitudinal study, which recruits patients from the entire federal territory. In addition, patients from the Clinical Dementia Centre are recruited at the Neurological and Psychiatric Clinic of the University Medical Center of G’ttingen, with these usually classical clinical forms being internal controls. The aim of the study is to characterize the biological factors and parameters that define the disease progression in AD.

After the patient is informed and consent is given, the inclusion examination is carried out. It includes a detailed history and anamnesis as well as a physical examination, which includes an in-depth examination of the neurological status. A neuropsychological test for cognitive testing is performed using the CERAD-plus test battery. Furthermore, the GDS score is obtained, which allows an assessment of the severity of the cognitive deficits by means of a 7-stage classification. The ADL score is used to assess the activities of daily life (Lawton and Brody 1969).

Six months after the initial examination, a telephone follow-up is carried out. Further investigations are carried out on an annual basis and correspond to the initial examination.

Last Update 21/09/2017

The European Prospective Investigation into Cancer and Nutrition (EPIC) is a prospective cohort with more than 521,000 study participants enrolled from 23 centres in 10 western European countries. Detailed information on diet, lifestyle characteristics, anthropometric measurements, and medical history was collected at recruitment (1992-1999).

Biological samples including plasma, serum, leukocytes, and erythrocytes were also collected at baseline from 387,889 individuals and are stored at the International Agency for Research on Cancer – World Health Organization (IARC-WHO) and mirrored at EPIC collaborating centres. Overall, the EPIC biorepositories host more than 9 million aliquots, constituting one of the largest biobanks in the world for biochemical and genetic investigations on cancer and other chronic diseases. Follow-up measures of lifestyle exposures have been collected and will be centralized at IARC in 2016.

Last update – 25/04/2017

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 

The key goal of EUROSCA-NHS is to determine and compare the rate of disease progression in SCA1, SCA2, SCA3 and SCA6. To this end, a newly developed and validated ataxia scale (Scale for the Assessment and Rating of Ataxia, SARA) will be used. EUROSCA-NHS has a number of secondary aims including determination of the order and occurrence of non-ataxia symptoms, assessment of activities of daily living (ADL) and quality of life (QoL), and identification of predictors of disease progression and survival.

Patients are first seen at a baseline visit, followed by annual visits for 3 years scheduled ᄆ 3 months around the specified time point. After the initial 3 year observation period, visits are done at irregular intervals each time they went to hospital.

Last update – 12/08/2017

The DEAS is a nationwide representative survey of the German population aged 40 and older that combines cross-sectional and longitudinal samples. Participants from baseline samples (drawn every six years) are followed up and enter the different panel samples. Panel data was collected at the same time as baseline samples until 2008. Starting from 2011, panel samples are interviewed every three years. Thus, DEAS enables an analysis of social change using the cross-sectional data of 1996, 2002, 2008, and 2014, as well as an investigation of intra-individual development over three to eighteen years (1996-2002-2008-2011-2014).

Last update – 16/02/2017