Global Hip Dysplasia Registry (GHDR)
Global Pediatric Orthopaedic Registry of Trauma & Health Outcomes (PedORTHO)
Global POISE
Rare Hip Conditions Registry (RHCR)
SCFE Longitudinal International Prospective Registry (SLIP)

Rare Hip Conditions Registry (RHCR)

Rare Hip Conditions Registry (RHCR)

Call for Investigators

We are piloting RHCR with 3 conditions:

  1. The hip in spinal muscular atrophy (SMA)

  2. The hip in Rett Syndrome

  3. The hip in Down Syndrome

If you are interested in joining (or championing a particular hip condition), we would love to hear from you!

Interested investigators can contribute to as many or as few of the included conditions as desired.

Please complete the RHCR investigator interest survey to indicate your interest.

Registry Objectives:

Develop a multi-centre, international, prospective registry aimed at better understanding:

  • the natural history

  • optimal treatments

  • outcomes

for a number of rare pediatric hip conditions.

Hip Condition:

Rare Pediatric Hip Conditions

Rare paediatric hip conditions

29 CONDITIONS INCLUDED IN RHCR

  • Bone Cysts involving the Hip

  • Coxa Vara

  • Developmental Dysplasia of the Hip

  • Femoroacetabular Impingement

  • Idiopathic Chondrolysis of the Hip

  • Juvenile Idiopathic Arthritis & the Hip

  • Larsen Syndrome and the Hip

  • Legg-Calve-Perthes Disease

  • Musculoskeletal Infection of the Hip

  • Osteochondroma Involving the Hip

  • Osteoid Osteoma Involving the Hip

  • Pediatric pelvic injuries

  • Pediatric Proximal Femoral Fractures

  • Slipped Capital Femoral Epiphysis (SCFE)

  • The Hip in Arthrogryposis

  • The Hip in Cerebral Palsy

  • The Hip in Charcot-Marie-Tooth Disease

  • The Hip in children with Trisomy 21

  • The Hip in Fibrous Dysplasia

  • The Hip in Mucopolysaccharidoses

  • The Hip in Muscular Dystrophy

  • The Hip in Myelomeningocele

  • The Hip in Osteogenesis Imperfecta

  • The Hip in Poliomyelitis

  • The Hip in Rett Syndrome

  • The Hip in Sickle Cell Disease

  • The Hip in Spinal Muscular Atrophy

  • Transient Synovitis

  • Traumatic Hip Dislocation in Children

Our Work

2023

Action Plan:

• Define data collection fields
• Build REDCap database
• Submit ethics
• Approach centres for participation

2022

Achievements:

  • Protocol drafted & reviewed by collaborators

  • Ethics submission

  • Consent/assent forms drafted

  • Defined data collection fields

2021

Achievements:

  • Developed the registry concept

  • Reached out to global collaborators to gauge interest in participation

  • Gathered feedback on which conditions to include