Occipital horn syndrome
- Cutis laxa X-linked
- EDS IX
- EDS IX (formerly)
- Ehlers-Danlos syndrome type IX
- Ehlers-Danlos syndrome, occipital horn type (formerly)
Your QuestionI believe I may have occipital horn syndrome. How can I be tested for this? Is it important, for personal or research purposes, that I get tested?
We have identified the following information that we hope you find helpful. If you still have questions, please contact us.
Questions on this page
The following online resources can help you find a genetics professional in your community:
- The National Society of Genetic Counselors provides a searchable directory of US and international genetic counseling services.
- The American College of Medical Genetics has a searchable database of US genetics clinics.
- The University of Kansas Medical Center provides a list of US and international genetic centers, clinics, and departments.
- The American Society of Human Genetics maintains a database of its members, which includes individuals who live outside of the United States. Visit the link to obtain a list of the geneticists in your country, some of whom may be researchers that do not provide medical care.
The main differences between clinical genetic testing and research testing are the purpose of the test and who receives the results. The goals of research testing include finding unknown genes, learning how genes work, and advancing our understanding of genetic conditions. The results of testing done as part of a research study are usually not available to patients or their healthcare providers. Clinical testing, on the other hand, is done to find out about an inherited disorder in an individual patient or family. People receive the results of a clinical test and can use them to help them make decisions about medical care or reproductive issues.
It is important for people considering genetic testing to know whether the test is available on a clinical or research basis. Clinical and research testing both involve a process of informed consent in which patients learn about the testing procedure, the risks and benefits of the test, and the potential consequences of testing.
- US National Library of Medicine. Cutis laxa. Genetics Home Reference. June 2009; http://ghr.nlm.nih.gov/condition/cutis-laxa. Accessed 1/31/2012.
- Kaler S.. ATP7A-Related Copper Transport Disorders. GeneReviews. October 14, 2010; http://www.ncbi.nlm.nih.gov/books/NBK1413/#top. Accessed 1/31/2012.
- US National Library of Medicine. What are the benefits of genetic testing. Genetics Home Reference. January 30, 2012; http://ghr.nlm.nih.gov/handbook/testing/benefits. Accessed 2/1/2012.
- US National Library of Medicine. Genetic Testing. Genetics Home Reference. January 30, 2012; http://ghr.nlm.nih.gov/handbook/testing?show=all#researchtesting. Accessed 2/1/2012.