Patient-Centered Outcome Measures

Congenital Upper Limb Anomalies


The ICHOM Set of Patient-Centered Outcome Measures for Congenital Upper Limb Anomalies 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 Inflammatory Arthritis. 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 mortality, bleeding, infection, wound healing and general medicine
  2. Evaluated via Goniometry
  3. Evaluated via Manual Muscle Strength Testing
  4. Evaluated via Dynamometry
  5. Tracked via PROMIS Upper Extremity
  6. Appearance tracked via Likert Scale
  7. Tracked via PROMIS Depression
  8. Tracked via PROMIS Anxiety
  9. Tracked via PROMIS Paediatric Global Hea
  10. Tracked via PROMIS Peer-Relationships

Implementation Resources

You will need a Connect account to access the following documents:

Congenital Upper Limb Anomalies Reference Guide
Congenital Upper Limb Anomalies Data Dictionary

You can access the following documents without:

Congenital Upper Limb Anomalies Flyer

You can join here. If you are already a member, please login here.

ICHOM Accreditation Product Logo

All of the basic information you need to implement ICHOM Sets is available in the links above.

However, for a faster, more easily integrated process, we offer digitised versions of the Set measures. These are designed for immediate upload to existing EMR systems.

This is available as part of our Accreditation package, which recognises your work in putting patient outcomes at the heart of treatment.

Find out more

Team that developed this set

Co-Chair | Bran Sivakumar | Great Ormond Street Hospital
Co-Chair | Christianne van Nieuwenhoven | Erasmus Medical Center
Research Fellow | Monique Ardon | Rijndam Rehabilitation | Erasmus Medical Center
Project Leader | Alethse De la Torre | ICHOM
Standardisation Director | Jason Arora | ICHOM

David McCombe | Royal Children’s Hospital Melbourne
Richard Lawson | New Children’s Hospital – Sydney

Kristen Davidge | SickKids

Raja Sabapathy | Ganga Hospital

Tracy Fairplay | Studio Fairplay

Anna Gerber Ekblom | Karolinska Institutet
Liselotte Hermansson | Örebro University Hospital

Andrea Jester | Birmingham Children’s Hospital

Amir Taghinia | Boston Children’s Hospital
Amy Lake | Texas Scottish Rite Hospital
Brian Labow | Boston Children’s Hospital
Charles Goldfarb | Washington University
Donald Bae | Boston Children’s Hospital
Kerby Oberg | Loma Linda University
Lesley Butler | Texas Scottish Rite Hospital
Scott Oishi | Texas Scottish Rite Hospital

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©2023 ICHOM | ©2023 ICHOM Sets of Patient Centered Outcome Measures are made available under copyright by ICHOM. They may not be used in commercial contexts without the prior written permission of ICHOM


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