Research forms the question. Participation shapes the answer.
In more than 100 years there are still more questions than answers when it comes to Perthes disease. Perthes.org is committed to advancing research in the field of Perthes disease and rare diseases. We do this by independent research, donating to research, and promoting ongoing research. Explore the current research directives in the field of Perthes disease and perhaps join a study group or clinical trial!
If you are an organization involved in Perthes or Rare Disease research and wish to be added to our list of resources, please contact us!
The Perthes Contact Registry
Sponsored by Perthes.org
Children with Perthes disease and adults impacted by Perthes understand the challenges of a rare disease. Join Perthes.org to help impact research. The Perthes Contact Registry (PCR) is a registrant populated database that gives researchers access to information about Perthes disease and who it affects. Participation in the registry is strictly voluntary. Should you choose not to participate, you will still have full membership access to Perthes.org. Participation in the registry is for adults only.
It’s only 5 minutes.
The International Perthes Study Group (IPSG)
Founded in 2012 and consisting of more than 40 pediatric orthopedic surgeons from around the world, the IPSG evaluates evidence based practices to address areas of uncertainty through collaborative research. See what the IPSG has been learning:
[Once described as painless,] pain is a significant factor present among patients in the early stages of Perthes, sometimes severe enough to interfere with school attendance.
Find Current Clinical Studies from Around the World
At LCPF we firmly believe in the need for research and its benefits. While we encourage the support of research, we provide this information for the benefit of the Perthes community and do not endorse any particular research, organization, or treatment.
While 5,000 have Perthes, 30 millon have rare diseases.
We have all felt isolated at some point in our lives. Many patients and families surviving rare diseases feel that way often. But they are not alone, clinicians and researchers whose life’s passion are diseases most people have never heard of feel that way too. Without frequent incidences of a disease, researchers may face more questions than answers. Evaluating treatment options and patient outcomes is challenging when there are comparably few resources. Funding can be scarce and research participants may be few and far between. Through advanced research and funding directives several organizations have championed this cause but they need your help by donation, research participation, and advocacy.
“NORD, along with its more than 260 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.” –NORD
“GARD provides the public with access to current, reliable, and easy-to-understand information about rare or genetic diseases in English or Spanish.” –GARD
“The RDCRN program is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing.” –RDCRN
“Genetic Alliance programs are designed to give people the tools to shape their own healthcare by finding resources for conditions/diseases, conducting research for new treatments, or partnering with providers to improve care.” –Genetic Alliance