CoRDS/iSACRA PATIENT REGISTRY NOW LIVE!

The first ever gathering of information about sacral agenesis/caudal regression syndrome (SA/CRS) on a large and wordwide scale is now available. A patient registry is a confidential questionaire that is completed by individuals who have this condition, and/or their parents/primary caretakers. The data from this questionaire is stored in a large database and accessed by researchers/medical professionals at Coordination of Rare Diseases at Sanford University (CoRDS). CoRDS has assisted more thant 7000 organizations serving individuals with rare conditions to develop and run patient registries. By completing the questioniare, more current and accurate information about living with SA/CRS can be accessed, researched, and published in medical journals. The patient registry essentially puts SA/CRS on the medical map, progressing from the current experience where most medical professionals have never heard of the condition or seen an individual with this condition. From this activity, treatment protocols can be developed, improving the quality of treatment and care. If you have this condition or are a parent/caregiver of an individual with this condition, complete the patient registry at this link: http://cords.sanfordresearch.org.