The hip is a “ball-and-socket” joint. In DDH, the “ball,” or femoral head, is loose in the hip socket, or acetabulum, making the hip unstable and prone to dislocation. DDH is most often present at birth although the condition may develop later on during infancy or early childhood. If caught early, DDH can often be corrected without surgery using a brace. However, if the condition isn’t properly diagnosed and managed, it can lead to chronic pain, limping, early-onset osteoarthritis and the need for total hip replacement in early adulthood.
In 2010, IHDI, a non-profit organization dedicated to improving quality of life for people with hip dysplasia, began a short-term study to build consensus about the best ways to diagnose and manage DDH. Dr. Mulpuri, Dr. Schaeffer and investigators from around the world expanded upon this original study to create the International Hip Dysplasia Registry, increasing the size and scope and global reach of this initiative. The registry now collects data on children with DDH treated at medical centers across the world, including information about demographics, medical history, diagnosis, manner of treatment, and outcomes following treatment. While the original IHDI study collected outcomes for two years following treatment, the registry now collects outcomes until children are 14 to 18 years old and have stopped growing.
Data collected through the registry is already helping clarify some of the open issues around DDH. For example, evidence from the registry supports the use of a brace as a first line treatment for infants under six months who have dislocated hips.
In the last year, the registry has expanded in size and scope and now includes 23 treatment centres, up from the original nine, and collects data on children with less severe forms of DDH, in addition to more severely affected children. While the original treatment centres were all in Europe, North America and Australia, the registry has recently added centres in India and China and researchers plan to expand it to South America and Africa.
“We’re really pleased the registry is becoming truly worldwide by including centres in middle and low income countries,” said Dr. Schaeffer.
“Children in these countries are particularly vulnerable to suffering long-term complications from DDH due to delayed diagnosis and treatment. The data we’re gathering from these new centres will help us develop approaches to DDH screening and treatment that are workable in lower resource settings.”
Ultimately, Dr. Mulpuri, Dr. Schaeffer and their colleagues and collaborators around the world are working towards creating a global, evidence-based approach to diagnosing and treating DDH.
“Children shouldn’t have to experience pain and disability due to a treatable condition like DDH,” said Dr. Mulpuri.
“We are working toward creating a standard of care that will give all babies with DDH the best possible outcomes so they can live healthy, pain-free lives.”
I’m a HIPpy, a community of doctors, researchers, parents, and children dedicated to the goal of improving hip health, supports research and advocacy efforts at BC Children’s Hospital to improve care for hip dysplasia in BC and beyond. To find out more about I’m a HIPpy’s important work and progress so far, please visit imahippy.org.
Dr. Kishore Mulpuri is an Investigator and Pediatric Orthopedic surgeon at BC Children’s Hospital, an Associate Professor in the UBC Department of Orthopedics and the Research Director of the International Hip Dysplasia Institute.
Dr. Emily Schaeffer is a Postdoctoral Research Fellow at BC Children’s Hospital and the UBC Department of Orthopaedics, and is the Scientific Lead for the International Hip Dysplasia Registry.