Patient Worthy™ had the unique opportunity to talk to the Coordination of Rare Diseases at Sanford, or CoRDS. Check out the interview below.
1) Can you tell us a little about the focus of CoRDS?
CoRDS, or the Coordination of Rare Diseases at Sanford, is a centralized patient registry and natural history study offered at no cost to our participants or researchers. Although based at Sanford Research in Sioux Falls, South Dakota, we offer our patient registry and natural history services internationally to people living with all 7,000 rare diseases. Our goal is to connect as many patients and researchers as possible to help advance treatments and cures for all rare diseases.
Typically, we collaborate with rare disease patient advocacy groups (PAGs) but also with other non-profits and other commercially focused entities. Our platform allows PAGs and other groups to launch registries that are specific to a rare disease, or they can use our standard questionnaire, which meets the data requirements established by the Office of Rare Diseases Research at the National Institutes of Health. These questionnaires capture data critical to helping researchers find treatments and cures for rare disease. The data forms include questions on symptoms, standard of living and general progression of each participant. These questionnaires help the CoRDS team track each disease and/or diagnosis.
Researchers can contact us to determine if the CoRDS database 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 database, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, a team of experts in rare disease, 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.
CoRDS does not sell data and allows participants to withdraw at any time.
2) As you know, Patient Worthy™ is highly interested in promoting anything that helps the rare disease community at large, so naturally we are very interested in knowing the history of the Coordination of Rare Diseases a Sanford (CoRDS) and how it came to be. Can you provide us with some insight?
In 2007, a transformational financial gift by Denny Sanford to Sanford Health allowed for the expansion of children’s health and research initiatives at Sanford Research. This led to the development of the CoRDS program.
Current Sanford Research Executive Vice President and researcher David Pearce, Ph.D., was leading the Sanford Research Children’s Health Research Center at the time. Knowing that the majority of rare diseases affect children and have some sort of genetic link, he was instrumental in the development of the CoRDS program.
3) A few weeks back, we wrote a small article regarding some great organizations that provide resources and information that help rare disease patients manage their situation and become more informed. If I were a person who was just diagnosed with a rare disease, how exactly will being part of a patient registry help me or the larger community of which I am now a part ?
Being a part of CoRDS offers the opportunity to be a part of a rare disease registry that accepts anyone with any rare disease. We believe that by being a contact registry for anyone with any rare disease, we can be a centralized contact registry for both commercial entities and researchers looking for clinical trial and research participants. We also collect common data elements on all of these individuals and hope that one day the data collected provides insight for scientists and researchers into potential cures and treatments. We collaborate with the NIH’s Global Rare Disease Registry (GRDR) office to align our de-identified data into its Global Unique Identifier (GUID) program in an attempt to collate all data about all individuals with a rare disease.
Participating in CoRDS offers more than the potential to participate in research. Providing data on any given rare disease is valuable to current/future families affected by that very same rare disease. It also allows us to begin combining information that may help physicians better diagnose/treat patients in the future. Participant data could lead to greater understanding of the outcomes or progression specific to each rare disease. Participation not only benefits the participant but human kind as a whole.
4) Since Sanford Research falls under the larger Sanford Health umbrella (and so, of course, does CoRDS) is there ever an overlap between CoRDS and any other services you provide, such as doctor and location assistance, medical services, and health information?
Absolutely! Being part of an integrated health system means CoRDS is connected to a span of services that could benefit those in the rare disease community. Our staff has access to our Sanford specialty physicians in order to review the list of new patients within Sanford that may benefit from participating in CoRDS. This has led to insights within our own organization’s electronic medical records (EMR) system that may help any rare disease community member in Sanford Health’s network, including connecting our participants to our Sanford rare disease experts.
5) In regard, to the Health Library featured on the Sanford Health site, what have been some of the primary challenges Sanford has encountered and had to overcome when it comes to keeping the library up to date and relevant for those patients trying to learn more about non-rare and rare diseases?
Sanford Health has a team of patient education experts that collaborate with national organizations to help produce and improve upon the educational resources we provide to patients, both online and in clinic/hospital settings. We are also looking to add and improve the educational resources Sanford offers.
6) What is the ultimate goal of CoRDS and its patient registry in regard to patients, patient advocacy organizations, and the state of healthcare at large?
When looking at the big picture, the goal of CoRDS is to accelerate research into rare diseases, which fits well with Sanford’s mission, “Dedicated to the work of health and healing.” With the collaboration of our partnering groups and participants, CoRDS hopes to connect our participants to clinical trials and other research opportunities, which about 92 percent of our participants are interested in.
We are here to provide our services to anyone with a rare disease, with a special focus on supporting the ultra-rare and underrepresented diseases. Launching a patient registry can be extremely expensive, which makes it difficult for these smaller communities. With the support of CoRDS, we hope to take the headache out of starting a registry for these groups. CoRDS’ takes on the cost of developing and hosting our partners’ databases so they can direct funds to their scientists and researchers. We do not want a patient registry to be a cost these groups incur.
It’s our belief that CoRDS can and will benefit health worldwide. With our registry and natural history data, we support patient care for some of the most difficult cases, including those who have been misdiagnosed and undiagnosed as well as the chronically ill. Ultimately, we want to support improvement in the quality of care for these individuals. All of these patients typically frequent the hospital at a much greater rate than your average healthy person. CoRDS acts as their safety net when they have no one else to turn to and gives them a sense of community and support as they search for answers.
For more information about CoRDS at Sanford, click here.