FORGET ABOUT THE GOLD STANDARD WHAT ABOUT THE GOLDEN THREAD!
The condition CTEV (Congenital Talipes Equinovarus) or commonly known as Clubfoot is a complex condition. The Golden Standard of treatment for this condition is the Ponseti method of treatment. It is a non-surgical method that is commonly used by most facilities who treat orthopedic conditions such as Shriners Hospitals and Children's. That is unfortunately where the attention to detail ended also. Through crowd-sourced data, literature, and direct family history feedback the CRF was able to compile a list of reasons as to why patients should be treated as individuals with different treatment options.
Although most patients and their families are especially thankful for a non-surgical intervention method to treat clubfoot they are concerned about one thing in particular: The lack of research into the origin of this condition and obvious things that has never received any attention in the past at least in terms of research publications, the detail that is lacking in some of the conclusions and frankly the lack of a descriptive name and definition.
Clubfoot runs like a golden thread through a number of seemingly unrelated conditions, for example, Marfan Syndrome, Arthrogryposis, Spina Bifida, Larsen's Syndrome, Klinefelter Syndrome, Tethered Spinal Cord, Charcot Marie Tooth, Duchenne's Muscular Dystrophy, Multiple Epiphyseal Dysplasias... and the list goes on.
Why does it show up in so many seemingly different conditions is? This question has been under discussion in the CLUBFOOT RESEARCH FORUMS and now Foundation since 2011. Is the condition clubfoot really just a condition of the foot or does it involve much more than just feet? What are the typical symptoms? What other body parts are affected? Is it different between patients?....and many more questions are arising every day.
These questions above are all unique opportunities for researchers or if you will research gaps. The Clubfoot Research Foundation has been passing on these research gaps to researchers all across the world and also frequently jumps in to provide literature to researchers that request it. We even passed on several research topics to the CDC in 2014. A much larger broader research approach is necessary to answer questions about this condition! Hopefully, this GOLDEN THREAD leads to more GOLDEN treatments and solutions in the future. Can it just be the key to solve these other often severe and varied puzzling conditions?