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Klinefelter's Syndrome

What is Klinefelter's Syndrome?

Klinefelter's Syndrome is a rare genetic condition caused by a chromosome aneuploidy.

 

Klinefelter's Syndrome is a rare genetic condition caused by a chromosome aneuploidy.
Acknowledgement of Klinefelter's Syndrome has not been added yet.
Prevalence Information of Klinefelter's Syndrome has not been added yet.
Synonyms for Klinefelter's Syndrome has not been added yet.
Cause of Klinefelter's Syndrome has not been added yet.
Symptoms for Klinefelter's Syndrome has not been added yet.
Diagnosis of Klinefelter's Syndrome has not been added yet.
Diagnostic tests of Klinefelter's Syndrome has not been added yet
Treatments of Klinefelter's Syndrome has not been added yet.
Prognosis of Klinefelter's Syndrome has not been added yet.
Tips or Suggestions of Klinefelter's Syndrome has not been added yet.
References of Klinefelter's Syndrome has not been added yet.
Klinefelter Syndrome & Associates Created by khenry
Last updated 11 Dec 2008, 01:15 AM

Posted by khenry
11 Dec 2008, 01:13 AM

Members of KS&A number in the 5,000 range, however, our non-profit organization assists all individuals with one or more extra X and/or Y chromosome and their families lead fuller and more productive lives. I invite you to call our toll free number to talk with one of our program coordinators or interact with others with these variations at 888-999-9428 ext. 41.

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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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Klinefelter Syndrome & Associates

Created by khenry | Last updated 11 Dec 2008, 01:15 AM


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