Other Names for this Disease
- Asphyxiating thoracic dystrophy
- Chondroectodermal dysplasia-like syndrome
- Infantile thoracic dystrophy
- Jeune's syndrome
Your QuestionAre there any research studies or clinical trials involving Jeune syndrome?
We have identified the following information that we hope you find helpful. If you still have questions, please contact us.
Questions on this page
There is one study titled “Natural History of Asphyxiating Thoracic Dystrophy (DTJ)” which has been completed and may be of interest to you. The purpose of the study was to determine the genes responsible for Jeune Syndrome and to define the range and type of medical problems they cause over time. Additional information about this study can be obtained by clicking on the title above.
If you are interested in receiving results for the above mentioned clinical trial, we recommend you can contact the National Library of Medicine at the telephone number 301-594-5983 and select option 2 to request this information.
In addition, ClinicalTrials.gov has listed a clinical trial titled, “Evaluation and Treatment of Skeletal Diseases,” which may be of interest. We recommend you review its "eligibility" criteria to determine its appropriateness. Click on the title and use the study’s contact information to learn more.
You can also contact the following skeletal dysplasia registries which are involved in clinical and laboratory investigations of these disorders.
International Skeletal Dysplasia Registry
Medical Genetics Institute
8635 West Third Street, Suite 665
Los Angeles, CA 90048
Web site: http://www.csmc.edu/3805.html
Greenberg Center for Skeletal Dysplasias
Johns Hopkins University
Institute of Genetic Medicine
600 North Wolfe Street
Baltimore, MD 21287
You can learn more about participating in clinical trials by visiting the Research portion of this webpage.
- Asphyxiating thoracic dystrophy. Genetic Home Reference. 2008; http://ghr.nlm.nih.gov/condition=asphyxiatingthoracicdystrophy. Accessed 1/21/2010.