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Genetic and Rare Diseases Information Center (GARD)

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Fibrosing mediastinitis


Other Names for this Disease

  • Idiopathic mediastinal fibrosis
  • Mediastinal fibrosis
  • Sclerosing mediastinitis
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.

Your Question

How is fibrosing mediastinitis treated? How can I learn more about research?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

How might fibrosing mediastinitis be treated?

There is no cure for fibrosing mediastinitis and the benefits of current treatments are unclear. In general, treatment options depend on which structures of the mediastinum are affected (i.e. the heart, large blood vessels, windpipe, esophagus, and lymph nodes), the severity of the scarring and, in some cases, the cause of the condition. For example, fibrosing mediastinitis caused by histoplasmosis may be treated with antifungal medications while cases caused by autoimmune disorders may respond best to corticosteroids.[1] Other treatment options include surgery to removed scarred tissue and local therapies to treat specific problems (i.e. stents, laser therapy).[2][3]
Last updated: 11/6/2014

Are there any research studies or clinical trials enrolling people with fibrosing mediastinitis?

We are not aware of clinical trials or research studies enrolling people with fibrosing mediastinitis at the time.

The 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. No studies involving fibrosing mediastinitis are listed at this time but check this site often for updates. To search for a study, use "fibrosing mediastinitis" as your search term.

You can also contact the Patient Recruitment and Public Liaison (PRPL) Office at the National Institutes of Health (NIH). We recommend calling the toll-free number listed below to speak with a specialist who can help you determine if you are eligible for any clinical trials.

Patient Recruitment and Public Liaison Office (PRPL) NIH Clinical Center
National Institutes of Health
Bethesda, Maryland 20892-2655
Toll-free: 800-411-1222
Fax: 301-480-9793
Email: prpl@mail.cc.nih.gov

If you are interested in enrolling in a clinical trial, you can find general information at the ClinicalTrials.gov webpage.

A tutorial about clinical trials can be found at this link from the National Library of Medicine.

You may be interested in learning more about the following national research registry.

ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Research Resources (NCRR), a center of the National Institutes of Health (NIH), the primary Federal agency for conducting and supporting medical research. Click on the link to learn more about ResearchMatch.

Advocacy groups often provide information on research opportunites and ways to connect with others. The following organizations may be able to help in this regard.

The FM Foundtation
Online e-mail form: http://thefmfoundation.org/contact-us.html
Website: http://thefmfoundation.org/contact-us.html

Fibrosing Mediastinitis
Website: http://www.fibrosing-mediastinitis.com/

American Lung Association
61 Broadway 6th Floor
New York NY 10006
Toll-free: 800-LUNGUSA (800-586-4871)
Online E-mail form: http://www.lungusa.org/about-us/contact-us.html 
Website: http://www.lungusa.org

The National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. The NORD has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.

National Organization for Rare Disorders (NORD)
55 Kenosia Avenue
PO Box 1968
Danbury, CT 06813-1968
Toll-free: 1-800-999-6673 (voicemail only)
Telephone: 203-744-0100
TDD: 203-797-9590
Fax: 203-798-2291
E-mail: orphan@rarediseases.org
Website: http://www.rarediseases.org/
Last updated: 11/6/2014

References
Other Names for this Disease
  • Idiopathic mediastinal fibrosis
  • Mediastinal fibrosis
  • Sclerosing mediastinitis
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.