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Insight into the Coordination of Rare Diseases at Sanford registry

There is a consensus in the industry that data on rare diseases is limited, incomplete, and difficult to find or access. Recently we came across the CoRDS patient registry based at Sanford University and learned that the registry is an effective tool used to gather information useful to researchers studying rare diseases.

We sat down with Benjamin Forred, Project Manager, and Austin Letcher, Senior Research Associate at CoRDS to learn more about the registry and hopes for the future.

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Cytel: Please can you give an overview of the Coordination of Rare Diseases at Sanford (CoRDS) registry?

Benjamin: We are part of a company called Sanford Health, which is a large hospital system in the Midwest part of the United States covering healthcare for five of the states.  We work for Sanford Research’, the research division of Sanford Health.  CoRDS is a centralized international patient registry for all rare diseases and a subset of that research arm. It was founded in 2010 by Dr. David Pearce, who is the President of Sanford Research today and he is an internationally renowned researcher in Batten Disease. David recognized the need in the rare disease community for a registry that would not hold patients’ data as proprietary but acknowledges that the people with the disease have their own story and own their own data. It was also important that the registry was provided at no cost.

Austin: The goal of the CoRDS registry is to connect as many patients and researchers as possible to help advance treatments and cures for rare diseases. The CoRDS registry is free for patients to enroll and for researchers to access. We work with patient advocacy groups, individuals, and researchers to coordinate the advancement of research into the 7,000 rare diseases.

Cytel: Please can you provide an outline of the work you do?

Benjamin: At Sanford Research we have a focus on rare diseases, but we also focus on other areas like cancer research, pediatric research, and diseases that affect children. We also have a large type one diabetes initiative alongside some smaller initiatives in regenerative medicine and stem cell biology. CoRDS, on the other hand, is the disease agnostic registry. We are here to serve as the collection point for patients to input their rare disease data. This includes information on when were they diagnosed, how old are they, what are some of their symptoms.

Austin: CoRDS also works to partner with rare disease advocacy groups, so that we can build disease-specific questionnaires and give those communities the opportunity to participate in what's called a natural history study. For a disease that's more common like type one diabetes we know how that plays out. But rare diseases affect so few people that we just don't know how they progress the majority of the time. And because of that, we don't know how to research them, we don't know what sorts of issues affect them and so on.  CoRDS is really there to provide that backbone natural history study-not only to connect patients to researchers but to give researchers some direction as they develop their research programs.

Cytel: What are the objectives of the registry?

  1. We connect rare disease patients with the researchers
  2. Provide a good natural history of each disease, building up a mineable knowledge base
  3. Inform patients of clinical trials and encourage participation

Cytel: How does CoRDS work?

Benjamin: The CoRDS registry is made up of information submitted by individuals with rare diseases or their caretakers. Enrolling is done online and requires the following information to be filled out:  CoRDS Registry Form, CoRDS Informed Consent form and a Questionnaire. That information, when de-identified, can be accessed by researchers who have appropriate approval in order to find participants that are eligible for their studies. Individuals signing up to the registry are also asked if they would like to give consent to share their information with certain patient advocacy groups (PAGs) and/or existing registries.

Cytel: Are there any pain points to solve? 

Austin: One of the biggest problems CoRDS solves is that it's an open-access database. With a lot of other registries and natural history studies, all that data becomes proprietary, let's say the pharma company that owns it, or even sometimes the advocacy group that owns it. CoRDS is looking to change that, shake the game up. We're giving access to the data to approved researchers that are credible and competent to advance knowledge and understanding of rare diseases. There is, of course, a scientific review process that researchers go through for anyone who petitions for access to data within the registry.

Cytel: Have there been any significant milestones? 

Benjamin: We’ve given over 1,000 data sets to researchers within the past two years and connected over 5,000 participants with a researcher, or to a research study. The registry has been building up over the past few years and it’s finally hit a critical mass where over the past six months people are getting to know our name and know who we are and what we stand for.

Cytel: What are your aspirations for the future?

Austin: I think the next milestone for us to really make is branching into our own hospital and educating our physicians, our genetic counsellors to boost recruitment. And not only our own healthcare system, but nationally and internationally getting this resource in the hands of the physicians. This is important because people are so often turned away with a misdiagnosis, or they are undiagnosed. And CoRDS can really act as a safety net for those individuals. So a physician might not be able to give them the answers, but they could refer them to us and know that their data is potentially helping people in the future, or even themselves. So it gives people hope.

Benjamin: If I could have a long-term goal, I think that it's logical that we could connect patient’s physical and biological samples to their registry. And so they're not only providing us with their data, but we could have a biological sample banked here at Sanford Research that could be shared with researchers to provide the valuable material they need in order to advance the therapies, even if it's just a small sample of DNA. 80% of rare diseases have a genetic component and so there is a tremendous amount of power in being able to provide that as a research tool.

Cytel: Why are the advocacy groups so important?

Benjamin: A group of people that have a rare disease can feel very isolated, alone, and often they will find each other through social media, particularly Facebook, or Twitter. They will come together virtually and form a foundation or an advocacy group. The eventual goal for all of these groups is to build a registry, whether they know it or not. They need to build some sort of cohesive knowledge base of what their needs look like so that researchers know what they're looking at. And the big problem is that these people are average individuals like you and I they can't invest the resources into building a registry as we have. CoRDS really fills this gap, we are offering this 100% free of charge.

Austin: Another thing to add is that participants own their data, so the CoRDS registry is in a sense patient owned. We manage the operations and the infrastructure, but that data is theirs.  We are not mining the data for our research purposes or selling it. If one of our researchers wanted to use the data from CoRDS they would have to go through the exact same process that someone from another research facility would undertake. This is very important to our patients in the US, their life insurance will drastically increase if they have pre-existing conditions under the current legislation. So that's something that a lot of our participants worry about, it’s only for approved researchers and approved research.

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Cytel: How many rare diseases are logged in the database?

Austin: In the CoRDS database we have just over 750 rare diseases represented.

Benjamin: To put that into context, there are about 7,000 rare diseases, that we know of, or that we consider rare. Rare is defined here in the US a lot of times by the orphan drug act, and that states that any condition that affects fewer than 200,000 individuals is considered rare. So it winds up being one in about 1,500 people. One thing that I always find amazing to think about when we're talking about rare diseases is that we're talking about conditions that affect very few people in isolation. But there are 30 million Americans who have a rare disease, and so, in an overall population of 300 million, that winds up being 10 %.  While it's rare to have any one rare disease, it turns out that it's not that rare for you to have a rare disease in some shape or form. And so that's another reason why I think the work that CoRDS does is so important.

Cytel: Thank you for taking the time to talk to us and outlining the amazing work the team is doing at Sanford Research.


Why the registry is important to industry

Ursula Garczarek, PhD, Associate Director of Strategic Consulting commented “patient registries that share their data like CoRDS are essential for improving the situation of people with rare diseases. They have immediate benefit to patients and researchers by bringing them together among each other and with each other, for immediate mutual support, information exchange, and clinical trial participation. And they have long-term benefits for orphan drug development by collecting information in a systematic and increasingly standardized way. The scarcity of information is the huge hurdle in orphan drug development. With no registries, this is impacting even good individual study planning, and with good registries in place, information will remain scarce, but statisticians can make the most of it.

In theory, statisticians have methods that allow them to make the best use of all available information: combining evidence across clinical trials e.g. a shared (historical) control arm, and combining real world evidence with evidence of randomized clinical trials. Practically, the applicability and the reliability of the evidence that is generated by these methods depends on an overlap in the information collection processes: among other things, how the disease is described (“is the control group comparable?”), and how efficacy and safety endpoints are defined and measured. So I hope that the CoRDS registry, like Benjamin and Austin explain, can continue their work on disease-specific questionnaires and expand to also include patient’s physical and biological samples to their registry, as this will get more and more important.


Learn More 

For more information the CoRDS registry visit http://www.sanfordresearch.org/SpecialPrograms/cords/

Advocacy groups can get in touch directly. We are happy to facilitate building communities to ensure that you receive support, knowledge, and access to treatment. If you would like more information email cords@sandfordhealth.org or call 001 877 658 9192 for an informal chat.


About Benjamin Forred, MBA, Translational Research Project Manager at Sanford Research Forred_Benjamin_MUG_RGB.jpg

Ben has worked in the field of biomedical research since 2009 when he earned his bachelor’s degree in Biology. He spent nearly seven years working in, and managing, a laboratory that focused on pulmonary development in the context of premature infants.  His laboratory training is based in cellular biology and redox biochemistry. Ben has earned an MBA from the University of South Dakota and has focused on using his skills and education to support biomedical research in a completely different way. 


Currently, Ben works to build and strengthen business relationships between the research scientists and physicians at Sanford Health and external groups in industry and academia.  His career focus is on taking successful innovations from the basic sciences to the market and improving human health.

About Austin Letcher, MS, Senior Research Associate at Sanford Research Austin Letcher.jpg

Austin has been involved in the field of research since 2011, earning his Master of Science in Biomedical Engineering from the University of South Dakota and he holds Bachelor’s degrees in both physics and chemistry. Primarily, Austin works to guide partners through the entire data life cycle from concept to collect and, ultimately, dissemination. He works directly with partners to recruit participants and encourages participant involvement with the registry by empowering rare disease patients to leverage the value of their information for the development of treatments. He manages research access requests, provides approved researchers access to data on rare diseases of interest, and introduces eligible CoRDS participants to clinical trials.


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