Dr Donald Grosset
University of Glasgow
Tracking Parkinson's: Parkinson's repository of biomarkers and networked datasets (PROBAND)
Parkinson's disease & PD-related disorders
There remains a major need to link genetic and biomarker findings with patterns of disease involvement, to understand the diversity and mechanisms of disease development.
This programme will study four main areas of diversity in expression of Parkinson’s will be studied – motor, cognitive, therapy responsiveness, and non-motor features. A total of 3080 subjects will be recruited from 24 centres. 2000 patients with Parkinson’s onset within three years, and 750 first degree relatives, will be invited to participate. An additional 240 cases with Parkinson’s onset under 50 years, and 90 of their first degree relatives, will be invited. All participants will be gene tested for LRRK2 and GBA; under 50’s will be tested for Parkin and PINK1. Serum will be sampled serially and DNA will be stored long-term. Clinical scoring will adopt common data elements of the NINDS to maximise compatibility with other studies, and will include demographic, cognitive, quality of life, depression, autonomic, and impulse control recordings. Sampling will be repeated every 18 months, allowing between 2 and 4 visits per case.
The programme is linked to, and will support, prevailing scientific and clinical studies, including young onset Parkinson’s, mitochondrial, and neuroimaging studies, as well as serving as a biosample and data resource for future studies. Recruitment of participants to the Parkinson’s UK Tissue bank (Imperial College, London) will be encouraged. International linkage of clinical and scientific data will also occur, involving similar cohort studies in the United States, Sweden, Germany, and Italy.