Guest guest Posted September 23, 2004 Report Share Posted September 23, 2004 It is becoming increasingly evident to parents and health care workers caring for individuals with CHARGE syndrome that the bone health of these individuals is often neglected. Adolescents and adults with CHARGE syndrome appear to be at increased risk for developing frail bones and low bone density which, if left untreated, may lead to the development of osteoporosis. At the IWK Health Center in Halifax, Nova Scotia, Canada, we are currently examining the relationship between osteoporosis and CHARGE syndrome in adolescents and adults. If you know of an individual (age 13+) who would like to participate in this study, please contact Dr. Kim Blake (kblake@...) or her research assistant, Forward (keforwar@...). The study is questionnaire based; however, we would be very interested in receiving bone scan results (DEXA scan results) and hormone reports if these have been completed. The study protocol and the questionnaire were approved by the Isaac Walton Killam (IWK) Health Center Ethics Review Board and by the CHARGE Foundation USA Advisory Board. Thank-you to all those who have completed the questionnaire thus far, your interest and participation in this research has been vital. Sincerely, Forward Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.