Standard Sets

Parkinson’s Disease

Completed & Harmonized

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).
ICHOM Standard Sets Parkinson's Outcomes Wheel

Resource Documents

Parkinson Disease Reference Guide
Parkinson Disease Data Dictionary
Parkinson’s Disease Gap Analysis Tool
Parkinson’s Disease – A Consensus Set of Outcomes for Parkinson’s Disease from the International Consortium for Health Outcomes Measurement
Parkinson’s Disease – A Consensus Set of Outcomes for Parkinson’s Disease from the International Consortium for Health Outcomes Measurement
Parkinson Disease Flyer

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

ICHOM Standard Sets Parkinson's Working Group Members

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