Summary of Activities of International Hip Dysplasia Institute

Hip dysplasia is the most common abnormality in newborn infants and the most common cause of hip arthritis in women under the age of 50. Since its inception eight years ago, the International Hip Dysplasia Institute (IHDI), under the direction of the Arnold Palmer Medical Center Foundation, has taken the lead in the global humanitarian effort in treating hip dysplasia. Thanks to large philanthropic gifts from American comedian, Dan Whitney (aka Larry the Cable Guy), the Telefonica Foundation and many generous supporters from around the world and with the experience guidance from Charles T. Price, MD, the IHDI has made tremendous progress in offering hope to people faced with this common and debilitating condition.

Since our launch in 2009, with the help from our supporters, we have met our 8 initial goals. These goals and our efforts to complete them, include the following:

1. Create a group of doctors focused on the prevention and treatment of DDH (Developmental Dysplasia of the Hip).

   1. Formed the IHDI – A coordinated think tank comprised of established hip dysplasia experts from Canada, Australia, Mexico, England, and the United States focused on hip dysplasia innovation. Meets twice yearly with one meeting always in Orlando. Established a Multicenter Registry of DDH cases in five countries with Arnold Palmer Hospital physicians as the principal developers and coordinators.
   2. Published approximately 30 scientific papers.

2. Create a public resource for parents to find reliable and comprehensive information about DDH.

   1. Developed a website with up-to-date information for parents, patients and physicians.
   2. org receives approximately 4,000 visitors a day in English.
   3. org receives approximately 500 visitors a day in Spanish (the Spanish site was launched in February 2014).
   4. Assisted with the creation of chat rooms and Facebook communities in both English and Spanish (monitored for appropriateness).
   5. Created a “Contact Us” form with specific questions and referral suggestions.

3. Increase the awareness of DDH among the general public.

   1. Launched a public relations campaign to promote proper swaddling techniques and awareness of the risk of DDH resulted in millions of views in parent magazines and national news media including Good Morning America. As a result of these efforts, hip dysplasia is now widely known as a common condition affecting children and adults.
   2. Created a “hip-healthy baby carrier policy statement” and product approval criteria. This influenced the design of numerous products in the market on a global scale.
   3. Published a “Baby-wearing Initiative” for hip health – this is a new initiative by the IHDI, in cooperation with the American Academy of Pediatrics, as a possible preventive measure to promote improved hip development during infancy.

4. Address the lack of agreement amongst doctors about how to properly treat DDH.

   1. Developed a reliable classification system – now internationally recognized as the IHDI Classification that allows for meaningful comparisons.
   2. Multicenter database for treatment variations and outcomes to identify best practices.
      1. Initial study completed and published in 2016, in the prestigious Journal of Bone and Joint Surgery.
      2. The University of Vancouver is continuing the project with the help an additional grant.
   3. Focus groups using the Delphi method to develop standard approaches to diagnosis and create treatment plan.

5. Address the lack of standardized education models for diagnosis and treatment of DDH.

   1. Created an educational module for teaching examination and diagnosis for primary healthcare providers in English-speaking and Spanish-speaking regions.
   2. Developed a standardized initial treatment method based on scientific evidence and expert opinion of IHDI members.
   3. Developed a validated teaching module for distribution of the standardized initial treatment method.
   4. Developed a testing method – with simulation models – to confirm that students and primary healthcare providers education of diagnosis and treatment methods were appropriately maintained.
   5. Made these teaching and testing modules available with “teaching boxes” of materials and simulators for pediatric and orthopedic residency training programs and for primary healthcare training in underdeveloped regions (in both English and Spanish).

6. Improve treatments for better outcomes.

   1. Multicenter research comparisons are finding best practices.
   2. Biomechanical research studies for improvements in non-surgical treatments.

7. Research the possibility of prevention.

   1. Promoting prevention through proper swaddling and baby-wearing.
   2. Identifying possible underlying causes such as nutrition, including vitamin D deficiency.

8. Global Outreach

   1. Public health initiative in Ecuador as pilot project for awareness, diagnosis and initial treatment.
   2. Educational brochures translated into eight languages.
   3. Presentations and educational exhibits at national and international conferences.
   4. Webinars for physicians around the world.
   5. Support for international educational opportunities in Mexico, Ecuador and the Middle East where hip dysplasia is an endemic.