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Parkinson's Disease

The standard set

The ICHOM Standard Set for Parkinson's Disease is the result of hard work by a group of leading physicians, measurement experts and patients. It is our recommendation of the outcomes that matter most to patients with parkinson's disease. We urge all providers around the world to start measuring these outcomes to better understand how to improve the lives of their patients.

1 Includes cognitive impairment, hallucinations and psychosis, depressed mood, anxious mood, apathy, and features of dopamine dysregulation syndrome. Collected with Part 1A of the MDS-UPDRS.

2 Includes sleep problems, daytime sleepiness, pain and other sensations, urinary problems, constipation problems, lightheadedness on standing, fatigue, sweating, and sexual function. Collected with Part 1 of the MDS-UPDRS.

3 Includes speech, saliva and drooling, chewing and swallowing, eating tasks, dressing, hygiene, handwriting, doing hobbies and other activities, turning in bed, tremor, getting out of a bed, a car, or a deep chair, walking and balance, and freezing. Collected with Part 2 of the MDS-UPDRS.

4 Recommended to track via the Parkinson’s Disease Quality of Life Questionnaire (PDQ-8).

Download the flyer

A brief overview of the most important outcomes for patients relating to this ICHOM Standard Set.

Reference Guide

A complete overview of the ICHOM Standard Set, including definitions for each measure and selected PROM instruments, time points for collection, and associated risk factors.

Data Dictionary

An index of the outcomes and case-mix variables included in the standard set, how to code them, and the information you need to collect when implementing the outcomes in practice.

Team that developed this standard

Canada

Connie Marras | University of Toronto

Germany

Richard Dodel | Philipps-Universität Marburg

Italy

Angelo Antonini | IRCCS San Camillo, Venice

Netherlands

Bas Bloem | Radboud University Nijmegen Medical Center

Spain

Pablo Martinez-Martin | National Center of Epidemiology and CIBERNED

Sweden

Peter Hagell | Kristianstad University
Per Odin | Skåne University Hospital
Paul de Roos | Uppsala University Hospital

United Kingdom

K. Ray Chaudhuri | King’s College, London

United States

Shyamal Mehta | Mayo Clinic
Ryan Uitti | Mayo Clinic
Daniel Weintraub | Hospital of the University of Pennsylvania
Bill Wilson* | Parkinson’s Disease Foundation

* Patient representative

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