Prader-Willi Syndrome
What is Prader-Willi Syndrome?
Prader-Willi Syndrome is the most common genetic cause of life-threatening morbid obesity.
Last updated 5 Feb 2009, 03:18 AM
3 Jan 2009, 11:46 PM
If you or someone you know has just received a diagnosis of Prader-Willi Syndrome (PWS) for their child, we have a Package of Hope for them! The Package of Hope gives up-to-date information and personal success stories from parents. And our New Parent Mentoring program lets you link up wth other parents who have learned about PWS and how to cope with its challenges. Also, we have support counseling and 24-hour medical emergency crisis referral services. To access help or to get your Package of Hope, call 800-926-4797 or 941-312-0400. Craig Polhemus PWSA (USA)
Clinical Trials
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.
- Complete the screening form.
- Review the informed consent.
- 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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Help for and from parents
Created by cpolhemus | Last updated 5 Feb 2009, 03:18 AM
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