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Cylindromatosis

What is Cylindromatosis?

Cylindromatosis is a disease of autosomal dominant inheritance pattern characterized by the formation of benign tumors, predominantly in the scalp.

 

Cylindromatosis is a disease of autosomal dominant inheritance pattern characterized by the formation of benign tumors, predominantly in the scalp.
Acknowledgement of Cylindromatosis has not been added yet.
Prevalence Information of Cylindromatosis has not been added yet.
Synonyms for Cylindromatosis has not been added yet.
It occurs due to a defect in a tumor suppressor gene known as CYLD.
Symptoms for Cylindromatosis has not been added yet.
Diagnosis of Cylindromatosis has not been added yet.
Diagnostic tests of Cylindromatosis has not been added yet
Surgery is the best option. Skin grafting is a better option, it's permanent and gives wonderful results.
Other than it being potentially disfiguring, prognosis is great. Skin grafting is much less disfiguring than no surgery at all.
Tips or Suggestions of Cylindromatosis has not been added yet.
References of Cylindromatosis has not been added yet.
Cylindromatosis developments Created by insgitne11
Last updated 18 Dec 2008, 01:33 AM

Posted by insgitne11
18 Dec 2008, 01:33 AM

Hi all- I am a medical student trying to find patients with cylindromatosis. I have found a few of you and I know a lot more are out there. Anyways, the best way to get research done is to get patients in groups. This is hard to do with such a rare disease but I am dedicated to understanding, treating, and curing this disease. Check out my blog! http://cylindroma.blogspot.com

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Community Resources
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Cylindromatosis Patient Support Group Blog

Site created to foster support for cylindromatosis patients and to advocate for research in Cylindromatosis.

03/20/2017

Clinical Trials


Cords registry

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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Cylindromatosis developments

Created by insgitne11 | Last updated 18 Dec 2008, 01:33 AM


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