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Diseases

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?

Currently there is not a cure for fibrosing mediastinitis.  There is also limited evidence regarding the efficacy (benefits) of existing treatments.  In general H. capsulatum related fibrosing mediastinitis may be treated with antifungal medications, surgery to remove scarred tissue, and/or local therapy for complications.[1][2] Treatment of idiopathic fibrosing mediastintis may involve corticosteroids or tamoxifen.[3] Options are tailored to the patient depending on the type of fibrosing mediastinitis, severity of the disease, and how and which structures in the mediastinum are affected.  Treatment options should be discussed with a health care provider and surgery should be performed by a specialist experienced in the surgical treatment of people with fibrosing mediastinitis.

You can find relevant articles on the treatment of fibrosing mediastinitis through PubMed, a searchable database of biomedical journal articles. Although not all of the articles are available for free online, most articles listed in PubMed have a summary available. To obtain the full article, contact a medical/university library or your local library for interlibrary loan. You can also order articles online through the publisher’s Web site. Using "fibrosing mediastinitis" as your search term should help you locate articles. Use the advanced search feature to narrow your search results. Click here to view a search.
http://www.ncbi.nlm.nih.gov/PubMed 

The National Library of Medicine (NLM) Web site has a page for locating libraries in your area that can provide direct access to these journals (print or online). The Web page also describes how you can get these articles through interlibrary loan and Loansome Doc (an NLM document-ordering service). You can access this page at the following link http://nnlm.gov/members/. You can also contact the NLM toll-free at 888-346-3656 to locate libraries in your area.

Last updated: 5/6/2010

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. You can search ClinicalTrials.gov for updates regarding research opportunities.

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
Bethesda, Maryland 20892-2655
Toll-free: 800-411-1222
Fax: 301-480-9793
Email: prpl@mail.cc.nih.gov
Web site:  http://clinicalcenter.nih.gov/

If you are interested in enrolling in a clinical trial, you can find helpful general information on clinical trials at the following ClinicalTrials.gov Web page.
http://clinicaltrials.gov/ct2/info/understand

A tutorial about clinical trials that can also help answer your questions can be found at the following link from the National Library of Medicine:
http://www.nlm.nih.gov/medlineplus/tutorials/cancerclinicaltrials/htm/lesson.htm

Resources on many charitable or special-fare flights to research and treatment sites and low-cost hospitality accommodations for outpatients and family members, as well as ambulance services, are listed on the Web site of the Office of Rare Diseases Research (ORDR), part of the National Institutes of Health.
http://rarediseases.info.nih.gov/Resources.aspx?PageID=8

In addition, 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
Web site: http://thefmfoundation.org/contact-us.html  

Fibrosing Mediastinitis
Web site: 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 
Web site: 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
Web site: http://www.rarediseases.org/ 

Last updated: 5/6/2010

References
  • Rossi S, McAdams H, Rosado-de-Christenson M, Franks T, Galvin J. Fibrosing Mediastinitis. Radiographics. 2001;
  • Mason. Chapter 72. Murray & Nadel's Textbook of Respiratory Medicine, 4th ed.
  • Peebles RS, Carpenter CT, Dupont WD, Loyd JE. Medistinal fibrosis is associated with human leukocyte antigen-A2*. CHEST. 2000;
  • Chiller T. Chapter 5: Other infectious diseases related to travel. Centers for Disease Control and Prevention. 2009; http://wwwnc.ced.gov/travel/yellowbook/2010/chapter-5/histoplasmosis.aspx. Accessed 4/22/2010.
  • MacDonald S, Padley S. The mediastinum, including the pericardium. In: Adam A, Dixon AK. Grainger & Allison’s Diagnostic Radiology, 5th ed. Philadelphia, PA: Churchill Livingston; 2008;
  • Worrell JA, Donnelly EF, Martin JB, Bastarache JA, Loyd JE. Computed tomography and the idiopathic form of proliferative fibrosing mediastinits. J Thorac Imaging. 2007;
  • Devaraj A, Griffin N, Nicholson AG, Padley SPG. Computed tomography findings in fibrosing mediastinitis. Clinical Radiology. 2007;