Fall 2009 Newsletter
CARES Foundation, Inc.
CAH and Osteoporosis Screening Study UNC
WHO: Children with CAH who are 8-12 years old (bone age 14 years) and are still growing. Siblings (6-14 years old, bone age 14 years old) of those children with CAH who otherwise meet the same eligibility criteria except that they do not have CAH and are not on glucocorticoids.
WHY: Although cortisol replacement is essential to treat children with CAH, there is the potential risk of over-treatment with glucocorticoids that can result in abnormal weight gain, decreased linear growth and, more recently reported in adults, the risk of osteoporosis. We are now testing if there exists a risk for osteoporosis in children with CAH and if this risk is related to the dosing of glucocorticoid used, as would be expected with any medical condition in which steroids are required for long-term treatment. We are also examining if the subtype of CAH contributes to the risk for osteoporosis.
WHERE: Children will be enrolled in the study at the General Clinical Research Center at the University of North Carolina, Chapel Hill.
WHAT: Your child would have:
- Bone Age X-ray
- DXA scans (to screen for osteoporosis and for subtle spine fractures)
- Special X-ray of his/her arm to look at the effects of glucocorticoid dosing (Cortef, for example) on bone structure itself
- Blood and urine tests to determinethe degree of his/her “control” of CAH
- Blood test for genotyping for all children in the study. In this way, “control” siblings can find out if they are “unaffected” or “carriers”
WHEN: This would all occur in a one-time visit (3 hours) for your child with CAH and/or sibling.
HOW MUCH:: The clinical visit, including laboratory testing, radiologic evaluation and physical exam will be paid for by this protocol. Overnight accommodations can be arranged, a rental car to/from the airport and parking at UNC will be covered. Travel assistance is possible (please inquire for details). There is a $50 compensation provided for incidental costs for each child enrolled.
For more information, please contact:
Karen
J. Loechner, M.D./Ph.D.
Director,
UNC Pediatric Osteoporosis Clinic,Assistant Professor,
Pediatric
Endocrine Unit
919.216.5946
• 919.966.2423 (fax)
karen_loechner@med.unc.edu (email)
NCAH Study at Children's Hospital of Los Angeles
The Division of Endocrinology at Children's Hospital Los Angeles is currently recruiting subjects for a research study aimed at determining the stress-fighting ability in subjects with Non-classical Congenital Adrenal Hyperplasia (NCAH) and comparing these responses to those in subjects with Classical Congenital Adrenal Hyperplasia (CAH) and those in carriers of either disorder. If you have NCAH, CAH or are a family member (parent or sibling) of someone with either disease, and are interested in participating in this study, please contact:
Bhavna
Bali, MD at 323.361.8705
bbali@chla.usc.edu
or
Mitchell
Geffner, MD at 323.361.7032
mgeffner@chla.usc.edu
Identifying the Unmet Needs of Individuals with CAH
WHO: Women (18 & older) with CAH.
WHY: Due to the sensitive nature of the issues associated with CAH, it is likely that individuals with CAH will have needs that are not met in the management and treatment of the disorder. If so, genetic counselors may be in a position to fulfill some of the needs of these individuals. The purpose of this study is to identify the unmet needs of women with CAH, and to investigate how genetic counselors may expand their role in the management of this disorder to better meet women’s needs. The results of this study could also have implications for the role of other health care providers in the management of this disorder.
WHERE: Participants will be enrolled through e-mail or telephone contact. To set up an interview or request more information, please contact me or my faculty sponsor. Contact information is provided below.
WHAT: The study will consist of one telephone interview.
WHEN: The interview will last approximately 30-45 minutes.
HOW MUCH: There will be no costs involved with participation. There will be no compensation for participating in this study. If interested, please contact:
Kristin Zelley, principal investigator kzelley@arcadia.edu
Kathleen Valverde, faculty sponsor valverdk@arcadia.edu
215-572-4058
Please
pass this information on to any women you know with CAH who’d be interested
in participating in this study. Thank you.
Disclaimer: Any communication from CARES Foundation, Inc. is intended for informational and educational purposes only and in no way should be taken to be the provision or practice of medical, nursing or professional healthcare advice or services. The information should not be considered complete or exhaustive and should not be used in place of the visit, call, consultation or advice of your physician or other healthcare provider. You should not us the information in this or any CARES Foundation, Inc. communication to diagnose or treat CAH or any other disorder without first consulting with your physician or healthcare provider. The articles presented in this newsletter are for informational purposes only and do not necessarily reflect the views of CARES Foundation, Inc.