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Trisomy 13

What is Trisomy 13?

Tisomy 13 is caused by an additional chromosome 13 which disrupts the normal course of development.

 

Tisomy 13 is caused by an additional chromosome 13 which disrupts the normal course of development.
Acknowledgement of Trisomy 13 has not been added yet.
13.0http://www.orpha.net
Synonyms for Trisomy 13 has not been added yet.
Cause of Trisomy 13 has not been added yet.
Symptoms for Trisomy 13 has not been added yet.
Diagnosis of Trisomy 13 has not been added yet.
Diagnostic tests of Trisomy 13 has not been added yet
Treatments of Trisomy 13 has not been added yet.
Prognosis of Trisomy 13 has not been added yet.
Tips or Suggestions of Trisomy 13 has not been added yet.
References of Trisomy 13 has not been added yet.
Trisomy 13 Patau Syndrome Created by ThereseAnn
Last updated 20 Oct 2009, 05:31 PM

Posted by ThereseAnn
20 Oct 2009, 05:25 PM

Family support, photos, stories and many resources. "Living with Trisomy 13":http://www.livingwithtrisomy13.org "USA SOFT":http://www.trisomy.org

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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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Trisomy 13 Patau Syndrome

Created by ThereseAnn | Last updated 20 Oct 2009, 05:31 PM


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