Research
Program
ALGS CoRDS Patient Registry
In 2018, the ALGSA partnered with Coordination of Rare Diseases at Sanford (CoRDS) to establish the Alagille Syndrome Patient Registry. Based at Sanford Research in Souix Falls, SD, this free centralized international registry is the perfect actionable step for families affected by ALGS to help advance science in the field right from the comforts of home.
- House and give patients and caregivers a secure and private place to share their natural history data with clinicans and scientists, deidentified.
- Provide a systematically uniformed and organized real-world view of clinical practices, patient outcomes, safety, and comparative data for scientific, clinical, and health policy purposes.
The ALGS registry has the ability to house medical records consisting of imaging, labs, clinic notes, study reads, surgery data, weight and height history, medications, medical event history, and much more.
Get enrolled, today, to start contributing to the advancement of ALGS science! If you have problems enrolling or need help, contact CoRDS at 1-877-658-9192, or email cords@sanfordhealth.org.
Watch this video of the ALGSA Board and Staff at Sanford Research in 2018 where we donated bio-samples including saliva, blood, and punch biopsies of skin to help advance the Alagille Syndrome research there!
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