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Cystic Hygroma

What is Cystic Hygroma?

A Cystic Hygroma is a rare congenital cyst found near or around major organs usually in the head, neck & chest.

 

A Cystic Hygroma is a rare congenital cyst found near or around major organs usually in the head, neck & chest.
Acknowledgement of Cystic Hygroma has not been added yet.
Prevalence Information of Cystic Hygroma has not been added yet.
Synonyms for Cystic Hygroma has not been added yet.
Cause of Cystic Hygroma has not been added yet.
Symptoms for Cystic Hygroma has not been added yet.
Diagnosis of Cystic Hygroma has not been added yet.
Diagnostic tests of Cystic Hygroma has not been added yet
Treatments of Cystic Hygroma has not been added yet.
Prognosis of Cystic Hygroma has not been added yet.
Tips or Suggestions of Cystic Hygroma has not been added yet.
References of Cystic Hygroma has not been added yet.
Life Created by pryz1187
Last updated 25 May 2011, 03:04 PM

Posted by pryz1187
25 May 2011, 03:04 PM

I was born with Cystic Hygroma in1987. I would like to meet others with this disease, I know of no one with Cystic Hygroma but myself. I think it would be nice to relate to someone else and share information, there isn't much out there! Take Care!

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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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Created by pryz1187 | Last updated 25 May 2011, 03:04 PM


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