About CoRDS

The Coordination of Rare Diseases at Sanford (CoRDS) registry is a national and central registry for all rarediseases.  Individuals who are undiagnosed are also eligible to enrol in CoRDS. The goal of CoRDS is to create a central resource of data on rare diseases to help accelerate research into rare diseases.
CoRDS is headquartered in the Sanford Children’s Health Research Center at Sanford Research in Sioux Falls, SD and supervised by David Pearce, PhD.

Why CoRDS was established?
How CoRDS works
Meet the CoRDS Team
CoRDS Scientific Advisory Board

Why CoRDS was established?

The CoRDS registry was established in 2010 by Dr. David Pearce after determining the benefits of patient registries on research. As very few rare diseases have dedicated patient registries, thus the goal of the CoRDS registry is to serve as a central resource for data on rare diseases with the aim of accelerating research into those diseases.

How CoRDS works:

Patient registries are designed to collect, store and curate data on patients to be used for a specified purpose. They can be tools to establish natural history studies, establish prevalence, and connect patients with researchers who study their disease.

The CoRDS registry specifically houses basic contact and clinical information on any individual who chooses to enroll that has been diagnosed with a rare disease, a disease of unknown prevalence, or is still waiting a diagnosis. Researchers with appropriate IRB (Institutional Review Board) approval may apply to access that de-identified data set in order to determine if any individuals in the registry are eligible for their research study. 

There are many key stakeholders that are involved with the CoRDS Registry.  Any individual diagnosed with a rare disease, an uncommon disease with unknown prevalence, or any individual who is undiagnosed can enroll in CoRDS. Organizations that support individuals affected by rare diseases can collaborate by sharing information with their membership about the registry and the opportunity to enroll. Researchers can access CoRDS data if they have IRB approval for their research study.

Researchers with Institutional Review Board (IRB) approval can apply for access to CoRDS. After the Researcher’s application has been reviewed by the CoRDS Advisory Board, they may log in to CoRDS and view de-identified data that might be helpful to the research they are conducting. If they are interested in contacting a participant, they may notify CoRDS personnel who will contact the participant on the researcher’s behalf.  

Patients who are diagnosed with a rare disease, an uncommon disease with unknown prevalence and individuals who have not yet received a diagnosis are eligible to enroll in CoRDS. Participants who want to enroll, can complete the CoRDS Screening Form. After submitting the form, they will receive a unique username and password which they can use to log in and enroll by the secure platform. Participants will be notified of opportunities to participate in clinical trials and other research. CoRDS personnel will also contact participants annually to update their information.

Patient advocacy organizations that represent patients affected by rare diseases, often have an interest to set up a patient registry for a particular disease. Patient registries often require a lot of time and resources to establish and maintain. CoRDS personnel work directly with Patient advocacy organizations to set up a registry for the rare disease of interest.

If you’d like to learn more about CoRDS, please visit our FAQ page or contact cords@sanfordhealth.org

Meet the CoRDS Team

CoRDS was established by Dr. David Pearce, Director of the Sanford Children’s Health Research Center and Vice President of Sanford Research. Dr. Pearce also oversees a laboratory dedicated to the investigation of Juvenile Batten Diseases, a rare neurodegenerative disease. Dr. Pearce has a track record of using interdisciplinary research to study Batten disease and is interested in integrating basic science with clinical practice through bench-to-bedside research for all rare diseases.

The CoRDS Team is dedicated to the development of this central resource of rare disease data established to accelerate research into rare diseases.

 

"Rare diseases deeply impact individuals and their families. At Sanford Research, we have the ability to build initiatives that will potentially accelerate research into rare diseases- this is the goal of the Coordination of Rare Diseases at Sanford. When researchers, healthcare providers, and individuals affected by rare diseases are connected through a central resource like CoRDS, we can look forward to real change in this field."

David Pearce, PhD
Principal Investigator, CoRDS

 

"Since each individual rare disease affects fewer than 200,000 people in the United States, the search for a diagnosis with a rare disease can be a long and lonely road. The goal of CoRDS and its partners is to make that road seem a little less daunting. By bringing together all rare diseases in one registry, we can make bigger strides towards better information, better treatments, and better research. Together we can change what it means to be diagnosed with a rare disease." 

Liz Wheeler
Director, CoRDS

CoRDS Scientific Advisory Board

The CoRDS Scientific Advisory Board (SAB) serves as the governing body that review applications of researchers interested in accessing the CoRDS Registry and CoRDS Biobank. CoRDS SAB members review applications and grant access to CoRDS. 

 

Michelle Baack, MD, Neonatologist, Sanford Health;
Associate Scientist, Sanford Children’s Health Research Center

 

Liz Wheeler, CoRDS Director, Sanford Children's Health Research Center

 

Sarah Jones, MD, Pediatric Surgeon, Sanford Health, Assistant Professor of Surgery and Pediatrics, Sanford School of Medicine of The University of South Dakota.

 

Michael Kruer, MD, Pediatric Neurologist, Sanford Health;
Associate Scientist, Sanford Children’s Health Research Center

 

Angela Myers, MD, Pediatric Geneticist, Sanford Health

 

David Pearce, PhD, Senior Scientist & Director, Sanford Children's Health Research Center, Vice President, Sanford Research

  Kyle Roux, PhD, Associate Scientist, Sanford Children’s Health Research Center
  Verle Valentine, MD, Orthopedic and Sports Medicine, Sanford Health