Abstract

The Queen Square Brain Bank (QSBB) is recognised as a world leading neuropathological resource for brain tissue for study into Parkinson’s disease (PD) and Parkinson-plus syndromes. At recruitment to the donor register, a self-assessment form is given to every donor and used for administrative and research purposes. Due to the recent increase in donations from individuals with Parkinsonian syndromes and the latest advances on risk factors and symptomatology of PD, a new questionnaire is needed. This study is a literature review of existing self-report questionnaires used in PD, Parkinson-plus syndromes, hyperkinetic disorders and cognitive impairment, to assess their suitability for inclusion in the new questionnaire for QSBB brain donors. This is the first systematic review of our knowledge to include all five domains of Parkinsonian symptoms. Subsequently, the modified Delphi method was used to reach a consensus of the domains from an expert panel. This information was cross-referenced with the Clinical Data Interchange Standards Consortium. Through the creation of this new questionnaire, we hope to improve the quality of the data collected from brain donors, which hopefully will ultimately help improve our understanding and management of these disorders.