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Polydactyly Preaxial

What is Polydactyly Preaxial?

Polydactyly Preaxial is a congenital physical anomaly consisting of additional fingers.

 

Polydactyly Preaxial is a congenital physical anomaly consisting of additional fingers.
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25.0http://www.orpha.net
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i need help Created by becca
Last updated 9 Dec 2008, 02:49 PM

Posted by becca
9 Dec 2008, 02:49 PM

hey everyone, i'm from a high school in mancelona and i am doing research on polydactylism. we are making brochures and i picked this for my topic. i think it's very interesting to learn about. i was wondering if someone could help me out, please. it would be GREATLY appreciated, thank you!

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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.

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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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i need help

Created by becca | Last updated 9 Dec 2008, 02:49 PM


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