Standard Sets

Congenital Upper Limb Anomalies

Completed & Harmonized

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

Resource Documents

Overall Paediatric Health Reference Guide
Congenital Upper Limb Anomalies Reference Guide
Congenital Upper Limb Anomalies Data Dictionary
Congenital Upper Limb Anomalies Flyer

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

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

CANADA
Kristen Davidge | SickKids

INDIA
Raja Sabapathy | Ganga Hospital

ITALY
Tracy Fairplay | Studio Fairplay

SWEDEN
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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