Hip Dysplasia Research

What is the purpose of this research?

This multi-center research prospective multicenter cohort study is a collaborative project between Stanford University and other leading hip preservation academic institutions across the United States. The goal is to longitudinally collect and analyze data from patients undergoing hip preservation surgery across multiple research institutions nationally. We hope to use this research to improve surgical care and quality of life for patients with hip problems, including hip dysplasia, femoroacetabular impingement (FAI), and the sequelae of childhood hip disease. 

How are individuals selected for this study?

If eligible, patients undergoing hip preservation surgery will be asked to participate during their clinical appointment in our Palo Alto and Redwood City clinic locations.

Who is conducting this research and where is it being conducted?

The Principal Investigator for Stanford University is Dr. Stephanie Pun. Stanford University is 1 of 23 collaborating institutions for this data repository, with Washington University in St. Louis as the lead site.

Has recruitment started?

No. We plan on starting later in 2021. 

I am interested in learning more, participating in, or have questions about this study. Who can I reach out to?

Please contact research coordinator, Ann Richey at arichey@stanford.edu with any and all study questions. If you would like to learn more about the ANCHOR group, please visit the website: https://www.anchorhipsurgeons.com

International Hip Dysplasia Registry (IHDR)

What is IHDR?

The International Hip Dysplasia Registry (IHDR) is a prospective cohort study conducted by the British Columbia Children’s Hospital in Vancouver, BC and ~20 other study institutions including Stanford Children’s Health. Developmental Dysplasia of the Hip (DDH) is a developmental condition describing a spectrum of hip abnormalities ranging in severity from mild hip instability to hip dislocation. DDH is the most common pediatric hip condition, with 1-3% of all newborns diagnosed at birth. Every child born is clinically screened for hip instability. Despite screening and treatment, DDH remains a major cause of early osteoarthritis of the hip and hip replacement in young adults. This prospective study is the first of its kind, both in size and scope, with the potential to have direct impact on treatment methods and standard of care for DDH around the world.

How are individuals selected for this study?

Patients ages 10 years and younger, who are referred for a DDH screening or diagnosed with DDH, and have care provided by one or both natural or adoptive parents may be eligible for this study.

Why is this research being conducted?

The purpose of this study is to develop a better understanding of DDH, including risk factors, screening or surveillance of the hip, and different treatment options such as bracing and surgery.

Who is conducting this research and where is it being conducted?

The Principal Investigator at Stanford is Dr. Stephanie Pun at Stanford Children’s Health. There are also over 20 other physicians at other institutions, nationally and internationally.  

Has recruitment started?

Yes.

I am interested in learning more, participating in, or have questions about this study. Who can I reach out to?

Please contact research coordinator, Ann Richey at arichey@stanford.edu with any and all study questions. If you would like to read more about the IHDR prospective study or DDH, please visit https://bcchr.ca/IHDR, https://www.hipregistry.com/, or https://hipdysplasia.org/.   

SCFE Longitudinal International Prospective (SLIP) Registry

What is the purpose of this registry?

The goal of the SCFE Longitudinal International Prospective (SLIP) Registry is to develop a data set of Slipped Capital Femoral Epiphysis (SCFE) cases from hospitals throughout the world, to better evaluate diagnosis and treatment practices. As there are multiple available surgical treatments for SCFE, it has been difficult to determine best practices in choosing a treatment option for a patient. Hospitals and surgeons throughout the world have different methods and reasoning behind these surgical treatment options for SCFE. Thus, there is a need to develop comprehensive, evidence-based guidelines for SCFE treatment. By participating in the SLIP Registry, we are helping to develop a prospective registry to evaluate current practices, better understand treatments for children and teenagers with SCFE, and determine which treatments may be the most appropriate and beneficial for each patient.  

How are individuals selected for this study?

Patients under 18 years old with a confirmed diagnosis of SCFE will be asked if they would like to participate. Patients will be recruited during their follow-up appointments at participating centers.

Who is conducting this research and where is it being conducted?

The Principal Investigator at Stanford is Dr. Stephanie Pun at Stanford Children’s Health.

Has recruitment started?

Yes.

I am interested in learning more, participating in, or have questions about this study. Who can I reach out to?

Please contact research coordinator, Shayna Mehta at srmehta@stanford.edu with any and all study questions.

Short and Long-Term Clinical Outcomes of Hip Preservation Study

What is the Short and Long-Term Clinical Outcomes of Hip Preservation Surgery study?

This study investigates the clinical outcomes of hip preservation surgery in children and young adults with hip disease, with special attention to hip dysplasia and femoroacetabular impingement (FAI). Patients' clinical pain and function will be evaluated before hip preservation surgery interventions and afterwards at various time points. The hip preservation surgeries of interest include periacetabular osteotomy (PAO), hip arthroscopy, surgical dislocation of the hip, and femoral osteotomy. Participants will fill out pre-operative and post-operative questionnaires to assess pain and function levels. Data including physical exam and imaging studies will also be collected pre-operatively, intra-operatively, and post-operatively as part of patients’ routine care. Short-term (2-5 years), mid-term (10-15 years) and long-term (20-40 years) outcomes will be evaluated.

How are individuals selected for this study?

We are recruiting patients ages 1 through 60 who have been identified as clinically needing hip preservation surgery.

Why is this research being conducted?

Hip preservation surgery is a relatively new field within orthopaedics, so it is important to identify the positive and negative risk factors for success or failure of hip preservation procedures. We hope to improve hip preservation surgical techniques through evaluation of patient outcomes.

Who is conducting this research and where is it being conducted?

The Principal Investigator is Dr. Stephanie Pun at Stanford Children’s Health. In certain cases, we may be assessing a smaller cohort of this study’s patient population in collaboration with other institutions such as Boston Children’s Hospital (BCH).

Has recruitment started?

Yes. If eligible, patients will be asked to participate during their clinical appointment in our Palo Alto and Redwood City clinic locations.

I am interested in learning more, participating in, or have questions about this study. Who can I reach out to?

Please contact research coordinator, Ann Richey at arichey@stanford.edu with any and all study questions.

Background:

Early signs of pediatric hip dysplasia, also known as Developmental Dysplasia of the Hip (DDH), are not always obvious. Frank hip dislocations occur in only about 1 of 1,000 infants, but other forms of hip instability are more common, and may be identified by careful physical examination. In some patients at certain ages, the use of ultrasound and/or x-ray is appropriate, to determine if referral for pediatric orthopedic care is needed. The 2014 American Academy of Orthopaedic Surgeons Clinical Practice Guideline on management of hip dysplasia has answered questions about clinical management, appropriate image evaluation, and referral for specialized treatment.

Dr. Kevin Shea and his collaborators have developed a DDH care map using evidence-based guidelines in North America to identify DDH in the first 12 months, a timeframe in which treatment intervention is highly successful and low cost. The purpose of the care map was to reduce variation in the treatment of DDH and reduce the cost via avoiding unnecessary testing, all to improve patient care. Some challenges the care map aimed to address were due to a lack of provider familiarity with DDH examination skills and the appropriate imaging tests and treatment.

The group received a national healthcare award in quality improvement for implementation in an Idaho healthcare system that serves both rural and metropolitan areas. During the first-year of implementation, several observations were made: 1) during routine infant care, 86% of primary care providers used the DDH care map in the first year, compared with less than 20% prior to implementation, 2) an increased rate of appropriate diagnostic imaging test ordering for DDH evaluation, and 3) after 18 months of implementation, no late presenting cases of DDH presentation were identified.

Global work:

In collaboration with the International Hip Dysplasia Institute (IHDI) at the University of British Columbia, we have expanded this DDH care map development work to a global scale. We have established partnerships with local orthopaedic surgeons, professional associations, and institutions in China, India, and Ecuador. In order to develop culturally and institutionally appropriate clinical pathways for DDH, surveys have been conducted in Canada, China, Ecuador, India, and the United States to better understand existing screening and treatment practices in each country. The results of the North American pediatric orthopaedic surgeon survey were recently published in the Journal of Pediatric Orthopaedics1, and survey results from China and India have been presented at the POSNA and COA conferences.

We are currently seeking funding mechanisms to support care map implementation in these developing countries. The goal is to implement evidence-based, culturally-tailored DDH care maps to increase primary care awareness of screening and referral guidelines. We will pilot this project throughout healthcare systems in one country first and develop novel dissemination strategies to scale up DDH care map utilization globally using previously established international DDH outcome networks. We hypothesize that DDH care map implementation will increase primary care provider awareness and utilization of screening guidelines, followed by an increase in the number of early referrals to specialists for low-cost, successful interventions for DDH.

References:

Taylor IK, Burlile JF, Schaeffer EK, et al. Developmental Dysplasia of the Hip: An Examination of Care Practices of Pediatric Orthopaedic Surgeons in North America. J Pediatr Orthop. 2020;40(4):e248-e255. doi:10.1097/BPO.0000000000001505

Knowledge and Practices of Hip-Healthy Newborn Swaddling Among Maternity Nurses

Infant swaddling is a common practice believed to soothe and facilitate sleep. Tight swaddling, with the hips adducted and extended, is associated with developmental dysplasia of the hip (DDH). Neonatal nurses are typically the first medical professional caregivers for infants. Dr. Stephanie Pun, Associate Professor in the Department of Orthopaedic Surgery at Stanford University, is the principal investigator. In the preliminary study, 104 neonatal nurses were surveyed. Researchers found that only 62.4% of nurses had received prior swaddling education and 18.4% of nurses were unable to identify the correct infant swaddling position. Dr. Stephanie Pun and her research team concluded that a required and evidence-based education for nurses on hip-healthy swaddling may help to decrease DDH throughout the community and increase correct swaddling practices.

Research Question:

Does a Required Hip-Healthy Swaddling Training Module Improve the Knowledge and Rate of Correct Lower Extremity Swaddling Practices in Maternal and Neonatal Nurses?

Dr. Stephanie Pun and her research team are now collaborating with nurses within Stanford Children’s Health to develop educational resources for infant swaddling techniques. The goal of this study is to develop and implement an educational training module for all maternity and neonatal nurses to complete. The module will educate nurses on infant hip development and DDH pathophysiology, discuss DDH risk factors and improper swaddling positions, demonstrate hip-healthy swaddling techniques, and provide links to hip health resources. Nurses will be surveyed pre- and post-training to assess knowledge and if the required training module is shown to be effective, Dr. Stephanie Pun hopes to expand the training program to additional pediatric care units at Stanford and other institutions across the nation with the support of the International Hip Dysplasia Institute (IHDI).