International Hip Dysplasia Registry

The International Hip Dysplasia Registry (IHDR) is a prospective registry dedicated to improving and optimizing outcomes for children with DDH worldwide. IHDR is the first prospective registry of its kind in size and scope, and has the potential to directly impact screening, treatment methods and standard of care for DDH. IHDR was borne from a smaller study spearheaded by the International Hip Dysplasia Institute. Our goal has been to grow IHDR to collect data on all infants referred for DDH screening across a vast array of geographic locations. With 27 centres contributing from 7 countries across 5 continents, we have enormous potential to tangibly change current screening practices and monitoring protocols. This will not only have an actionable impact on infants who are screened for DDH risk factors and the millions more who may go unscreened until too late, but also reduce economic and social costs to both the families and hospital/health care systems globally. Ultimately, we aim to identify best treatment practices and help children and families impacted by this condition not only locally, but also around the globe.

We are still expanding and recruiting more international sites to understand how DDH is treated in developing countries (i.e. India and China). From data collected, we found that 90% of children diagnosed with DDH in North America, Britain and Australia were under the age of 2, whereas in India, 90% of children with DDH were diagnosed late, past the age of 2. This information helped facilitate the creation of a standardized “care pathway” for DDH treatment in Indian centres. These care pathways will continue to be developed for other countries, with the goal of identifying best treatment practices and creating a standardized treatment plan based on local resources available and evidence from IHDR. We are dedicated to developing and expanding our international research collaborations to facilitate faster data collection with wider applicability. In particular, collaborations between developed and developing countries have the potential to encourage capacity building and quality improvement, while mutually enhancing care for patients with surgical disorders.

Building on relationships established through IHDR, we are creating a specialized international research network dedicated to pediatric hip conditions: the Hip Health Outcomes in Pediatrics (Hip HOPe) Network. Our mission is to connect and foster cross-collaboration amongst global leaders in the field of pediatric hip pathology. In the coming years, the network will help create opportunities for idea exchange, identify research priorities and direction, and improve the quality and strength of research.

IHDR has also been working closely with a number of DDH advocacy groups from Canada, the US, the UK and Australia to form the DDH Knowledge Translation (KT) Group.  As the founder, IHDR has brought together the I’m a HIPpy Foundation, Spica Life, the International Hip Dysplasia Institute, Healthy Hips Australia, Miles 4 Hips, DDH UK and Steps Charity Worldwide as partners in this endeavor. The DDH KT group aims to facilitate the sharing of practical, relevant, and patient-friendly information about living with DDH. . The ultimate goal of this collaboration is to increase awareness of DDH and provide resources and support to families affected by DDH. As a first step, the group developed a survey aimed at capturing the international patient and family experiences during diagnosis and treatment for hip dysplasia. The response has been incredible, with a total of 739 survey participants across Canada, the US, the UK and Australia. We are currently disseminating a survey more specifically aimed at capturing the patient and family experience with brace treatment for DDH; the survey can be accessed at the following link: https://rc.bcchr.ca/redcap/surveys/?s=DLK3N4D77J   

Kishore Mulpuri, MBBS, MS (Ortho), MHS (Epi), FRCSC   Associate Professor, Department of Orthopaedics, University of British Columbia Pediatric Orthopaedic Surgeon, BC Children’s Hospital

Emily Schaeffer, PhD   Research Director, Department of Orthopaedics, University of British Columbia