Inventory of real world data sources in Parkinson’s disease

Background Real world data have an important role to play in the evaluation of epidemiology and burden of disease; and in assisting health-care decision-makers, especially related to coverage and payment decisions. However, there is currently no overview of the existing longitudinal real world data...

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Vydáno v:BMC neurology Ročník 17; číslo 1; s. 213 - 16
Hlavní autoři: Tanguy, Audrey, Jönsson, Linus, Ishihara, Lianna
Médium: Journal Article
Jazyk:angličtina
Vydáno: London BioMed Central 08.12.2017
BioMed Central Ltd
BMC
Témata:
Activities of daily living
Cohort studies
Data entry
Epidemiology
Longitudinal
Medical care, Cost of
Medical imaging equipment
Medicine
Medicine & Public Health
Movement disorders
Neurochemistry
Neurology
Neurosurgery
Parkinson disease
Parkinson's disease
Rating scales
Real-world
Research Article
Parkinson disease
Rating scales
Longitudinal
Cohort studies
Real-world
ISSN:1471-2377, 1471-2377
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Shrnutí:Background Real world data have an important role to play in the evaluation of epidemiology and burden of disease; and in assisting health-care decision-makers, especially related to coverage and payment decisions. However, there is currently no overview of the existing longitudinal real world data sources in Parkinson’s disease (PD) in the USA. Such an assessment can be very helpful, to support a future effort to harmonize real world data collection and use the available resources in an optimal way. Methods The objective of this comprehensive literature review is to systematically identify and describe the longitudinal, real world data sources in PD in the USA, and to provide a summary of their measurements (categorized into 8 main dimensions: motor and neurological functions, cognition, psychiatry, activities of daily living, sleep, quality of life, autonomic symptoms and other). The literature search was performed using MEDLINE, EMBASE and internet key word search. Results Of the 53 data sources identified between May and August 2016, 16 were still ongoing. Current medications (81%) and comorbidities (79%) were frequently collected, in comparison to medical imaging (36%), genetic information (30%), caregiver burden (11%) and healthcare costs (2%). Many different measurements ( n  = 108) were performed and an interesting variability among used measurements was revealed. Conclusions Many longitudinal real world data sources on PD exist. Different types of measurements have been performed over time. To allow comparison and pooling of these multiple data sources, it will be essential to harmonize practices in terms of types of measurements.
Bibliografie:ObjectType-Article-1
SourceType-Scholarly Journals-1
ObjectType-Feature-2
ObjectType-Review-3
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ISSN:1471-2377
1471-2377
DOI:10.1186/s12883-017-0985-0