ACSQHC-ARCR-075

The primary objective of this project is to establish a registry for adolescents and young adults with hip dysplasia to monitor their outcomes (with and without surgery) and to conduct research into causes and predictors of outcomes. All registry patients will have been referred to a surgeon with radiographic and symptomatic hip dysplasia, at a nominated site in Australia, are aged 10 to 55 years. Participants have had hip/groin pain for ≥ 3 months, primarily caused by hip dysplasia. The HOpE registry will record the patient’s demographics such as age, sex, postcode and hospital site. Patient reported outcome measures (PROMs) will also be used to assess pain, function and quality of life. These will be assessed at baseline, 6-months, 12-months and then annually. These include the Copenhagen Hip and Groin Outcome Score (HAGOS), EuroQol five-dimensions five-level (EQ5D5L), International Hip Outcome Tool (iHOT-12), Depression Anxiety Stress Scales (DASS-21), Work Productivity and Activity Impairment Questionnaire plus Classroom Impairment Questions: SHP Version 2, Insomnia Severity Index (ISI), perceived global improvement in pain and additional questions regarding sport participation, expectations and use of analgesics. Surgical data will also be entered by team members. This will include fixation methods, concomitant procedures, use of bone graft, use of navigation assistance, and presence of hypermobility conditions. A cost-effectiveness evaluation of healthcare costs and health service use related to surgical interventions for hip dysplasia will inform future models of hip dysplasia care across the person’s lifespan.