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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Carney complex


Other Names for this Disease

  • CAR
  • Carney myxoma-endocrine complex
  • Carney syndrome
  • CNC1
  • LAMB syndrome
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

My mother has recently been diagnosed with Carney Complex/Cushings syndrome. Where can we find more information and a place where she can receive emotional support?  A lot of the physicians involved in her care are unfamiliar with this condition. 

Our Answer

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

Where can I find more information on Carney complex?

We have identified sources of information on Carney complex that can help you learn more about this condition. You may wish to share some of these resources with health care providers who are unfamiliar with Carney complex.

For a comprehensive review of Carney complex you can visit GeneReviews. This review also provides information on the recommended clinical tests and treatment for Carney complex. GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions.
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=carney

Two articles from the online eMedicine Journal provide information on Carney complex at the following links. You may need to register to view the articles, but registration is free. Articles on eMedicine are written for healthcare professionals and may be difficult to understand for those without medical training. We suggest that you share this resource with a health care provider if you have questions.
http://www.emedicine.com/derm/topic805.htm
http://www.emedicine.com/med/topic2941.htm

Orphanet is a database dedicated to information on rare diseases and orphan drugs.  Access to this database is free of charge.  You can access the page on Carney complex by visiting the following link. 
http://www.orpha.net/consor/cgi-bin/OC_Exp.php?lng=EN&Expert=1359

More information on Carney complex is also available from the Web site for the New Zealand Dermatological Society.
http://www.dermnetnz.org/systemic/myxoma.html

Last updated: 12/18/2009

Where can I find support resources for people with Carney complex?

While we were unable to locate support resources specifically for Carney complex, we were able to locate organizations that provide support to cancer patients.

Cancer Hope Network
2 North Road, Suite A
Chester, NJ 07930
Toll-free: 1-877-467-3638
Phone: 908-879-4039
Fax: 908-879-6518
Web site: http://www.cancerhopenetwork.org

Rare Cancer Alliance
1649 North Pacana Way
Green Valley, AZ 85614
Phone: 520-625-5495 
Web site: http://www.rare-cancer.org

Cancer Coalition of America (Information and financial assistance for patients)
9396 Richmond Ave #307
Houston, TX 77063
Phone: 713-705-2330
Web site: http://www.cancercoalition.com

American Cancer Society, Inc. (Local chapters available)
1599 Clifton Road NE
Atlanta, GA 30329
Toll-free: 800-ACS-2345
Web e-mail form: http://www.cancer.org/asp/contactUs/cus_global.asp 
Web site: http://www.cancer.org
Last updated: 12/18/2009

Are there currently any clinical trials for Carney complex?

Yes, the Eunice Shriver Kennedy National Institute of Child and Human Development (NICHD) is currently enrolling patients for a study entitled, "Definition of the Genotype and Clinical Phenotype of Primary Pigmented Nodular Adrenocortical Disease (PPNAD), Carney Complex, Peutz-Jeghers Syndrome and Related Conditions." Individuals diagnosed with Carney complex and their families may be eligible to participate in this research study. Click on the study's title to learn more.
Last updated: 12/18/2009

Who can I contact to find out more about participating in clinical trials?

You can 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 or someone you know is eligible for any clinical trials.  

Patient Recruitment and Public Liaison Office
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/

Last updated: 8/25/2008

Where can I find transportation and lodging resources for clinical trials participants?

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 (ORD), part of the National Institutes of Health.
http://rarediseases.info.nih.gov/resources/5#category17
Last updated: 10/17/2013

Where can I find general information about clinical trials?

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/clinicaltrials/htm/index.htm
Last updated: 10/17/2013

How can I find a genetics professional in my area?

Genetics clinics are a source of information for individuals and families regarding genetic conditions, treatment, inheritance, and genetic risks to other family members. More information about genetic consultations is available from Genetics Home Reference. To find a genetics clinic, we recommend that you contact your primary healthcare provider for a referral.

The following online resources can help you find a genetics professional in your community:

Last updated: 7/17/2013
Other Names for this Disease
  • CAR
  • Carney myxoma-endocrine complex
  • Carney syndrome
  • CNC1
  • LAMB syndrome
See Disclaimer regarding information on this site. Some links on this page may take you to organizations outside of the National Institutes of Health.