The International Perthes Study Group reviewed current progress and looked toward the future at their second annual meeting.
This was a big week for the Perthes Study Group (IPSG). October 3rd, 4th and 5th marked the 2nd annual meeting. In attendance was a select but diverse group of 31 physicians from four continents and eight different countries and included surgeons, a radiologist, statisticians, and research assistants. The unifying principle that all these researchers hold is a dedication to furthering understanding of Perthes disease and improving the care of Perthes patients by performing quality research. The pivotal tool in early treatment decision-making is perfusion MRI (a special MRI technique which holds promise to provide early detection for which patients may benefit from surgical treatment and which patients will simply be observed).
In this meeting we reviewed progress over the last year. Much has been achieved in the research group’s brief history. Seventeen of the institutions have already gained IRB approval for patient enrollment, an MRI protocol has been established, data collection standardized, an internationally accessible database created, a website for patients and providers created, and funding of over a quarter-million dollars secured including two research grants. Several papers including a review of Perthes, two papers on the use of perfusion MRI, and several other presentations have already been written. In less than two years, this group is already changing patient care.
Even though it was discovered and named over one-hundred years ago, Perthes disease is such a rare and frustrating condition where little is known because even surgeons in large, research centers only see a handful of patients per year. Answers to treatment questions can only be answered when information is collected from large numbers of patients. One of the most useful achievements is the ability to pool the patients and experience from all the academic centers from around the world and learn from the combined experience and data collected.
The group agreed on stringent membership criteria which included institutional review board (IRB) approval, enrollment of patients in the group’s prospective trials, and at least 75% patient follow-up. Future short-term goals for the group are to complete and publish the modified Waldenstrom classification staging study, complete the PROMIS outcomes survey, complete the perfusion MRI estimation study.
