Rare Hip Conditions Registry (RHCR)
Call for Investigators
The Rare Hip Conditions Registry (RHCR) is a broad registry with the goal of eventually housing 29 individual hip conditions as sub-registries. We are focused on launching with 2 conditions - the hip in SMA &Trisomy 21.
Thank you to those of you who have expressed your interest in participating and/or leading specific sub-registries!
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
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