Noonan Syndrome
What is Noonan Syndrome?
Those diagnosed with Noonan Syndrome have the same life expectancy as the average individuals. However, depending on the severity of the symptoms and heart conditions that arrive with Noonan Syndrome, the life expectancy may change. Furthermore, facial features and other symptoms can change throughout time, sometimes becoming more and less amplified.
| Name | Description |
|---|---|
| Tips for Living with the Disorder | People living with Noonan Syndrome have been able to go on and continue to live a normal and exceptional life. Additionally, there are a vast amount of special services available to those affected by Noonan Syndrome, aimed to help social/vocational services, education, physical therapy, as well as speech therapy. Furthermore, it is recommended that if a patient has a history of easy bruising or excessive bleeding to avoid aspirin. Research into Noonan Syndrome is increasing everyday as researchers are pledging to find more information about this disorder. |
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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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