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Carney Complex

What is Carney Complex?

Carney Complex is a hereditary cancer syndrome characterized by spotty skin pigmentation, cardiac (heart) myxomas (tumors composed of mucous connective tissue), skin myxomas, and endocrine gland tumors.

 

Carney Complex is a hereditary cancer syndrome characterized by spotty skin pigmentation, cardiac (heart) myxomas (tumors composed of mucous connective tissue), skin myxomas, and endocrine gland tumors.
Acknowledgement of Carney Complex has not been added yet.
Prevalence Information of Carney Complex has not been added yet.
Synonyms for Carney Complex has not been added yet.
Cause of Carney Complex has not been added yet.
Symptoms for Carney Complex has not been added yet.
Diagnosis of Carney Complex has not been added yet.
Diagnostic tests of Carney Complex has not been added yet
Treatments of Carney Complex has not been added yet.
Prognosis of Carney Complex has not been added yet.
Tips or Suggestions of Carney Complex has not been added yet.
References of Carney Complex has not been added yet.
Have got diagnosed with Carney's Complex Created by zoomyman
Last updated 25 Jan 2014, 06:11 PM

Posted by zoomyman
25 Jan 2014, 06:09 PM

Hello there, Have got diagnosed with Carney Complex about a month ago following by a cardiac myxoma which was removed about 15 years ago and recent benign testicular tumor which has been removed also. I learn that this complex makes the body to produce tumors virtually anywhere in the body including thyroid gland and brain. Very worrying!!! I can see there are a few members of this comunity, who might want to share their experience. Please, spread the info. Knowlesge is the Power!

9 year old Created by dafad123
Last updated 21 Feb 2011, 11:41 AM

Posted by dafad123
21 Feb 2011, 11:41 AM

i looked every where to see if they had already started a community but there wasnt.we just started test at drs. office.so i will update with more information.my daughter is nine and very much an angel.if every one could live there lifes through a childs eyes.sometimes i think she should be the mom.

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CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

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im a mother of two my daughter is nine and son is going to be three.

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Have got diagnosed with Carney's Complex

Created by zoomyman | Last updated 25 Jan 2014, 06:11 PM

9 year old

Created by dafad123 | Last updated 21 Feb 2011, 11:41 AM


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