Registry Goals | BC Children’s Hospital Research Institute

The registry aims to:

1) Develop an international, prospective DDH registry that encompasses the entire diagnostic spectrum, with follow-up to skeletal maturity. Specific aims:

To identify area variation in screening, diagnosis and management protocols
To compare characteristics and outcomes of early- and late-presenting cases
To compare brace treatment outcomes within and across diagnostic categories
To compare surgical treatment outcomes within and across diagnostic categories
To determine the optimal timing of both bracing and surgical treatment
To identify and characterize risk factors for treatment complications (i.e. AVN)
To determine predictors of the need for hip reconstructive surgery in adolescence

2) Develop targeted, hypothesis-testing studies within the broader scope of the registry:

An assessment and analysis of risk factor screening and monitoring protocols for DDH by a non-inferiority randomized controlled trial (RCT)
A comparison of rigid versus dynamic bracing in early treatment of DDH by RCT
A comparison of observation versus bracing in clinically stable, ultrasonographically dysplastic hips by RCT
An analysis of the impact of brace treatment length after hip stabilization by RCT

3) Clinical Care

To globally improve screening, diagnosis, and management practices for DDH
To reduce the number of walking-age DDH diagnoses
To investigate the variability in screening, diagnosis, treatment, and current practice patterns for DDH in health care systems around the world
To create resource-specific DDH care pathways to be used in varying health care systems (Please see CAREMAP LINK to learn more)
To standardize DDH clinical care practices in health care systems of the Global North

4) Education

To create and provide information and learning platforms for primary care physicians, orthopaedic surgeons, and other health care professionals in regards to DDH screening, diagnosis, management, and treatment practices
To generate and share the best clinical practice guidelines as determined by registry data
To utilize registry data for global education sessions on DDH screening, diagnosis, management, and treatment
To create and provide global education exchange programs for residents and trainees

5) Advocacy

To promote general public awareness of DDH as a significant pediatric condition
To provide a platform for patients and families to have a voice in clinical and research priorities of DDH
To improve screening and resource management in resource-poor health care systems

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