The Limb Differences Network Spans Across the World

The International Limb Differences Registry (ILDR) is a global, prospective registry designed to capture the full spectrum of diagnoses leading to limb differences.

See below for the sub-registries being developed under ILDR.

Sub-Registries

Network Structure

We have established a framework consisting of a Scientific Advisory Board, Scientific Executive Committee, Special Interest Groups and Research Methodology Panel to guide the development and progress of this international registry.

Roadmap for Condition Specific Sub-Registries

We have brought together clinicians with expertise in specific limb differences to form the Scientific Advisory Committee (SAC) for each of the sub-registries under ILDN. We pair clinicians from high income countries with clinicians from low- and middle-income countries to ensure relevance to patients from these countries. SAC members work with the research team at BCCH to develop individual sub-registries.

Actively Recruiting Registries

Morquio B Disease

Scientific Advisory Board Members:
Dr. Stockler - BC Children’s Hospital
Osteogenesis Imperfecta

Scientific Advisory Board Members:
Dr. Jill Flanagan - Children’s Healthcare of Atlanta
Dr. Meagan Wallace - Children’s Hospital and Medical Center
Dr. Miguel Galban - Clínica Noel
Dr. Jeanne M. Franzone - Nemours Alfred. I. DuPont Hospital for Children, Wilmington, DE

Registries in Development

Blount's Disease

Design Phase
Scientific Advisory Board Members:
Dr. Christopher Iobst - National Children’s Hospital
Dr. Anirejuoritse Bafor - National Children’s Hospital
Dr. Emeka Izuagba - Centre for Advanced Specialty Surgery, Lagos, Nigeria
Musculoskeletal Infection

Testing Phase - Launch Winter 2025
Scientific Advisory Board Members:
Dr. Mohan Belthur - Phoenix Children’s Hospital
Dr. Melissa Esparza - Phoenix Children’s Hospital
Dr. Jessica Burns - Phoenix Children’s Hospital
Dr. James Fernanades - Sheffield Children’s Hospital
Dr. Ashish Ranade - Deenanath Mangeshkar Hospital
Fibular Hemimelia & Congenital Femoral Deficiencies

Design Phase
Scientific Advisory Board Members:
Dr. Marcel Abouasally - Alberta Children’s Hospital
Dr. Patricia Moreno - Institute of Orthopedics and Traumatology
Dr. Hitesh Shah - Kasturba Medical College
Dr. Jaap Tolk - Erasmus MC Sophia Children’s Hospital
Congenital Pseudoarthrosis of Tibia CPT

Testing Phase
Scientific Advisory Board Members:
Dr. Benjamin Joseph - Katsurba Medical College, Manipal
Dr. Hitesh Shah - Katsurba Medical College, Manipal
Dr. In Ho Choi - Chung-Ang University Hospital