Congenital Upper Limb Anomalies

The standard set

The ICHOM Standard Set 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


Standard Set materials have moved to ICHOM Connect and are still available free of charge. Please log in or register to gain access to unlimited ICHOM resources at a single click of a button. There, you can also indicate your interest in receiving updates about and implementing the Standard Set.

Available materials:

  • 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.
  • Press Release
  • Published Articles
  • Additional materials

Team that developed this standard

Project team

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

United Kingdom

Andrea Jester | Birmingham Children’s Hospital

United States

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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