The following information may help to address your question:
What is the typical outlook for people with Camuratic Englemann disease following surgery to treat skull thickening?
How can I learn more about medications, surgical procedures, and other treatments that have been effective in treating people Camurati Englemann disease?
GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of
The U.S. National Institutes of Health, through the National Library of Medicine, developed ClinicalTrials.gov to provide patients, family members, and members of the public with current information on clinical research studies. Currently no trials are listed as enrolling people with Camurati Englemann disease specifically, however there is a study titled Evaluation and Treatment of Skeletal Diseases which may be of interest to you. Click on the study title to learn more.
The Research Portfolio Online Reporting Tool (RePORTER) provides access to reports, data, and analyses of research activities at the National Institutes of Health (NIH), including information on NIH expenditures and the results of NIH-supported research. Although these projects may not conduct studies on humans, you may want to contact the investigators to learn more. To search for studies, click on the embedded link above and enter the disease name in the “Terms Search” box. Then click “Submit Query”.
Our search of RePORTER identified the following research studies which may be of interest to you.
CLINICAL, PATHOPHYSIOLOGIC AND THERAPEUTIC STUDIES
David Rimoin
Cedars-Sinai Medical Center
E-mail: david.rimoin@cshs.org
FUNCTIONAL ANALYSIS OF TGFBM3 LOCUS IN VASCULAR DEVELOPMENT AND DISEASE
TGFBM2 IN DEVELOPMENT AND DISEASE
Rosemary Akhurst
University of California San Francisco
E-mail: rakhurst@cc.ucsf.edu
You may also be interested in learning more about the following patient research registries:
Greenberg Center for Skeletal Dysplasias
Johns Hopkins University
Institute of Genetic Medicine
600 North Wolfe Street
Blalock 1008
Baltimore, MD 21287
Telephone: 410-614-0977
E-mail: deedee@jhmi.edu
Web site: http://www.hopkinsmedicine.org/geneticmedicine/CR/SKD/index.html
International Skeletal Dysplasia Registry
Medical Genetics Institute
Pacific Theatres, 4th Floor
8700 Beverly Blvd.
Los Angeles, CA 90048
Phone: 800-233-2771
Fax: 310-423-0462
Click here to view their online e-mail form.
Web site: http://www.csmc.edu/3805.html
We hope this information is helpful. We strongly recommend you discuss this information with your doctor. If you still have questions, please contact us.
Warm regards,
GARD Information Specialist
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