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.
- 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.
- 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.
- 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.
- Recommended to track via the Parkinson’s Disease Quality of Life Questionnaire (PDQ-8).
Team that developed this standard
Connie Marras | University of Toronto
Richard Dodel | Philipps-Universität Marburg
Angelo Antonini | IRCCS San Camillo, Venice
Bas Bloem | Radboud University Nijmegen Medical Center
Pablo Martinez-Martin | National Center of Epidemiology and CIBERNED
Peter Hagell | Kristianstad University
Per Odin | Skåne University Hospital
Paul de Roos | Uppsala University Hospital
K. Ray Chaudhuri | King’s College, London
Shyamal Mehta | Mayo Clinic
Ryan Uitti | Mayo Clinic
Daniel Weintraub | Hospital of the University of Pennsylvania
Bill Wilson* | Parkinson’s Disease Foundation
* Patient representative