Research

Sanford Research CHoRDS Registry

Better data leads to better advocacy, leads to better outcome

Sanford Research is a premier biomedical research institute in the Midwestern United States. They conduct research to innovate healthcare through cutting edge science. Sanford supports biomedical research across the research continuum, has a diverse range of research interests and cultivates future scientific innovators all while promoting community education. Their researchers work to build the foundation for future treatments and driving evidence-based care.

Research is key to improving the lives of individuals with Coffin-Low Syndrome (CLS). Sanford Research is a nonprofit research institution. Coordination of Rare Diseases at Sanford (CoRDS) is a centralized international patient registry for all rare diseases.

Sanford coordinates the advancement of research into more than 10,000 rare diseases including CLS.

  • Sanford works with patient advocacy groups, individuals and researchers.
  • They capture health information from individuals with a rare diagnosis, undiagnosed patients, unaffected carriers or at-risk patients.
  • Sanford connects researchers and patients and notify our participants of emerging clinical trials.
  • They make their registry accessible. Participants can enroll at no cost and researchers can access it for free.

If your family member has been diagnosed with CLS, please access the link below to provide data related to your family members health history. This data can be useful to researchers in finding a treatment for CLS. Your data is protected by Sanford Research. The link is CoRDS Patient Enrollment System – Login.

The United States National Library of Medicine at the National Institutes of Health maintains a database of completed research on life sciences and biomedical topics. Here you can find links to full text articles of all published research on Coffin-Lowry Syndrome.

Episode 47 – Coffin Lowry Syndrome Foundation

This is CoRDS Cast, a rare disease podcast created by the team at Sanford Research. Our rare disease registry, CoRDS, connects patients and researchers everywhere. Here, you’ll hear an interview with Theresa Moxley, President of the Coffin-Lowry Syndrome (CLS) Foundation.  Theresa sits down with Sanford Research personnel and discusses CLS to include the role the Foundation plays in assisting families.  She also discusses the importance of families with CLS to register with CoRDS.  In this podcast, Theresa helps to raise awareness of CLS one of 7,000 rare conditions.  Rare conditions affect 1 in 10 people worldwide.