I want to
share with you all the results of the survey study on MHE and Malignant
Degeneration that the MHE Coalition volunteered to invite participants for from
our own Facebook groups as well as international groups.
This was
back in 2013, and the results of the study were published in January of this
year. The number of participants was amazing, and had a major impact on the
study results. The researchers have apologized for the delay in letting us know
about publication, and sent us the published paper and the following email:
"Recently, our manuscript titled 'What is the proportion of patients with
multiple hereditary exostoses who undergo malignant degeneration?' was
published in the prestigious journal Clinical Orthopedics and Related Research.
This project
is the culmination of a survey study that we completed with the help of nearly 800 survey respondents in 2013.
Most
notably, this project would not have been possible without the assistance of
Chele Zelina, President of the MHE Coalition & Susan Wynn, Vice President
of The MHE Coalition and Co-founder & Director, MHE and Me and The Bumpy
Bone Club.
We believe our study plays an important role in the literature related to MHE.
Some of our conclusions are that:
1) in the
largest (and perhaps most heterogeneous) cohort of MHE patients of which we are
aware, we found the proportion of those undergoing malignant degeneration to be
2.7%;
2) malignant
change of MHE occurred at a mean age of 28.6 years, which underscores the
importance of following MHE patients well into skeletal maturity and beyond;
3)
clinicians might use this study to offer an unspecific statement of risk when
discussing the natural history of MHE; and
4) social
media and other web-based platforms can play an important role in social
support for MHE patients.
El Informe en PDF: CORR article.pdf
Thank you
again to all who participated in our survey.
Regards,
Cory Czajka, MD
Matt DiCaprio, MD
Division of Orthopedic Surgery
Albany Medical Center
Albany, NY, USA"
