Complex Regional Pain Syndrome is a chronic progressive disease characterized by severe pain, swelling and changes in the skin. CRPS results from dysfunction in the nervous system.
|Burning pain||Burning pain at the site of the injury|
|Increased skin sensitivity||Increased skin sensitivity|
|Swelling and stiffness||Swelling and stiffness in affected joints|
|Muscle spasm||Muscle spasm|
|Restricted mobility||Restricted mobility|
|Rapid or weak hair and nail growth||Rapid or weak hair and nail growth|
|Vasospasm||Constriction of the blood vessels|
|Mottled/Glassy Skin||mottled/glassy skin|
The reason behind advanced regional pain syndrome is not clearly understood. Treatment for advanced regional pain syndrome is best once started early. In such cases, improvement and even remission are attainable.
|Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)||
The Reflex Sympathetic Dystrophy Syndrome Association (RSDSA) was founded in 1984 to promote public and professional awareness of Complex Regional Pain Syndrome (CRPS), formerly known as Reflex Sympathetic Dystrophy (RSD).
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.
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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Created by Melisquent | Last updated 18 Nov 2015, 05:02 AM
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