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Introducing Sanford Discoveries, a new quarterly publication for Sanford employees and friends of the organization, covering Sanford’s Development and Research activities and the Sanford Initiatives.

Rare Disease Registry Putting the pieces together

discoveries Winter 2013





A Message from Dave Link Sanford CoRDS Registry Updates from Development & Research Event Calendar

message from David Link

Sanford Health Development & Research 1305 W 18th Street PO Box 5039 Sioux Falls, SD 57117-5039 For questions or additional information email us at or visit us on the web at

In our endeavors toward the complete integration of health services within a single enterprise, Sanford Health’s physicians, scientists, leaders and staff have harbored great dreams and delivered tremendous results. In February, we celebrated the sixth anniversary of Mr. Denny Sanford’s largest gift to our organization and the birth of the Sanford Health name. Over the course of that time, we have accomplished much but have not always taken the time to communicate these successes. In Sanford Health’s Development & Research division, we work every day to deliver on the commitments our organization has made to impact global health, identify cures and integrate research into clinical practice. Sanford Discoveries is a new quarterly publication designed to demonstrate the growth and milestones we have experienced in these areas. Each quarter of the year, we will showcase one area with specific emphasis and provide a series of highlights from others. Whether you are a member of the Sanford Family, a close partner, or a member of our community, I hope you feel a sense of pride in being associated with these initiatives.

David Link Sr. Executive Vice President, Sanford Health

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A rare disease is defined as one affecting fewer than 200,000 people in the United States. The “paradox of rarity� is that nearly 7,000 diseases are quantified as being rare and, collectively, those diseases impact more than 25 million people. Establishing the Coordination of Rare Diseases at Sanford (CoRDS) Registry presents an innovative approach to accelerating research into rare diseases. CoRDS builds upon the fact that treatments for many of

these diseases are symptomatic, and many rare diseases may actually share similar symptoms. For any given rare disease, collating information on the natural history of each patient offers the opportunity to perform a comparative analysis to connect understanding and treatment of the disease. Coordinating and generating a resource for multiple or potentially all rare diseases offers potential to families, physicians and researchers. (continued on page 4)

CoRDS by the Numbers Enrolled: 367 Screening: 375 Total Participants: 742 Diseases: 111

Sanford Research Vice President David Pearce, PhD, with the Sanford Children’s International Board

At Sanford Research, scientists and staff have developed a centralized registry to work with physicians, scientists and organizations around the world to collect data on these rare diseases. This will provide important information in linking these diseases and supporting novel therapies and cures. The mission of the Sanford Children’s Health Research Center is to develop new therapies from discoveries made in research labs by integrating basic science with clinical practice, a so-called “bench-to-bedside” approach. Dr. David Pearce, director of the Children’s Health Research Center and vice president of Sanford Research, has a track record of using interdisciplinary research to study the neurodegenerative disorder, Batten disease. This same interdisciplinary approach to research currently applies to a number of childhood diseases, many of which are categorized as rare. Many new developments in the diagnosis and treatment of human disease rely on research that involves

the collection and analysis of data. Lack of resources to apply to clinical studies, and the spread of rare patients around the world, limits the amount of data available for these rare diseases. The CoRDS registry collects and collates contact and clinical information. Even the most basic information – What is the diagnosis? When and where was the diagnosis made? Is the individual interested in participating in research? – can be extremely useful to researchers. This data collection, and central repository for patient and disease information, is a core focal point of the Sanford Children’s Health Research Center. Through the engagement of patient advocacy organizations, and communication to those organizations’ members, CoRDS provides a way for patients to learn about research opportunities. This allows for greater clinical trial participation which then has a greater potential impact through discovery.

are often motivated to participate in research, but there are so few opportunities,” said Pearce. “The CoRDS registry will support the acceleration of this research by providing a resource through which researchers can access information and identify individuals who are interested in participating.” Nearly 60 rare disease organizations have partnered with Sanford and the list is growing. The CoRDS registry is open to individuals of any age who have been diagnosed with any rare disease and includes participants from around the world. “Collaboration is paramount in this field,” says Liz Donohue, director of CoRDS. “This means engaging patient advocacy organizations, rare disease researchers, and healthcare providers.” For more information, visit

“Patients affected by rare diseases

Of the 7,000 known rare diseases, only 400 have FDA approved therapies. 80% of these are diseases that are genetic, and 50% of those affected are children. Many of these children

do not survive beyond the age of 4. 4  |  discoveries

updates Sanford Research Sanford Applied Biosciences As of January 1, 2013 Hematech Inc. joined Sanford creating Sanford Applied Biosciences (SAB). Over the past decade, Hematech developed the world’s first large animal platform technology to produce fully human antibodies using the latest advances in gene engineering and transfer to produce new biopharmaceuticals that help fight disease. With this genetic engineering, the company developed a line of cattle that produce fully human antibodies through a patented process that involves inserting human genes for antibody production into cattle and inactivating the native antibody genes. The genetically engineered cattle produce polyclonal and recombinant human antibodies derived from the plasma of the animals.

The Sanford Project

Todd & Linda Broin Chair and Director of The Sanford Project Alex Rabinovitch, MD

The Sanford Project (a cure for type 1 diabetes) is just a few months from completing its first clinical trial based on the research of Todd and Linda Broin Chair and Director of the Sanford Project Alex Rabinovitch, MD. By the end of May, the 57 patients in the trial will have completed one year under the trial protocol in either the treatment group (38 patients) or the control group (19 patients). The team will then begin to analyze the results. In the meantime, the Sanford Project continues to actively pursue basic research in pancreas development, beta cell regeneration and the autoimmunity process. Dr. Rabinovitch is also planning the next clinical trial that will begin following FDA approval. To accelerate clinical trial implementation, Sanford Research has recruited another physician-scientist to the Sanford Project, Kurt Griffin, MD, PhD, from the University of Arizona.

These antibodies are developed for treatment of human diseases such as cancer, autoimmune disorders, inflammation, infectious diseases and others. Developing Sanford Applied Biosciences, Sanford will utilize Hematech’s: 1. Technology and capability to make a meaningful contribution to resolving an important disease issue. 2. Capability in developing antibodies as a service for other biotech companies, generating revenue that will sustain the operations.

Center for Health Outcomes and Prevention Research (CHOPR) Amy Elliott, PhD, Center for Health Outcomes and Preventative Research director, received the largest single grant in Sanford Research history ($13.5 million) to establish the Collaborative Research Center for American Indian Health. This five-year grant from the National Institute on Minority Health and Health Disparities will create a platform to bring together tribal communities and health researchers from multiple disciplines to develop cutting-edge research that will address the significant health disparities experienced by South Dakota, North Dakota and Minnesota American Indians. This multi-disciplinary center will embrace a “social determinants of health” theme and will fund three research projects in pediatric asthma self-management, kidney transplant donation education, and emergency room utilization, as well as offer pilot grants and other resources in research culture/bioethics, regulation and methodology.  | 5 

donors have supported the creation of 35 new named endowments totaling nearly $1.2 million. In the Fargo Region, the Building Tomorrow Today Campaign has received pledges and gifts of more than $13.8 million toward the goal of $50 million. The inaugural Roger Maris Gala raised $1.2 million with more than 850 guests in attendance.

Sanford Research Team

Seed Grant Program Three years ago, Sanford Research established a seed grant program to assist in the development of research programs for physicians and staff that have an interest in research but need assistance getting started. The program provides seed funding and mentorship to further develop their proposals. The review committee recently announced the selection of five proposals from across the Sanford Health footprint based upon the criteria of purpose and priority, scientific integrity, potential for future funding, and feasibility. The recipients this year are:   • Dr. Kathryn Florio, Sanford Neurology Clinic, Sioux Falls   • Dr. Akram Khan, Sanford Children’s Specialty Clinic, Sioux Falls   • Dr. Benjamin Noonan, Sanford Orthopedics & Sports Medicine, Fargo   • Dr. Shelby Terstriep, Sanford Roger Maris Cancer Center, Fargo   • Dr. Robert Edwards, Sanford Downtown Eye Center, Bemidji

Sanford Health BioBank Sanford continues it’s commitment to clinically based research activities and personalized medicine through investments in Life Technologies Ion Torrent and Ion Proton earlyphase genomic capabilities. The aggressive development of biobanking infrastructure will provide Sanford with a library of DNA, and blood and tissue samples for future use as the

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costs of sequencing continue to drop. While focused initially on the Edith Sanford Breast Cancer initiative, the organization hopes to collect, consent and store samples from every patient that walks through a Sanford Clinic or Sanford Medical Center door. The Sanford Health BioBank occupies approximately 1,600 square feet in the Sanford Center. For DNA/genomic sequencing, the biobank operates a 3500 Genetic Analyzer, an Ion Torrent Personal Genome Machine, and an Ion Proton instrument. Initially, the technology will enable whole exome sequencing (sequencing of only the coding regions of DNA) using reagents and supplies currently available. Sanford Research has also developed an educational sequencing assay/chip for the Ion Torrent platform that will enable Sanford to perform sequence analysis of 20 human traits as a technology demonstration/educational tool. This chip is currently in the testing stage and Sanford hopes to begin offering it this Spring.

Sanford Health Foundation In the Bemidji Region, the Sanford Health Foundation raised $1.7 million in six months to bring 24-hour cardiology and da Vinci robotics surgery to the region. In Bismarck, the Foundation launched a $20 million Builders of Excellence Endowment matchinggift campaign. Pledged planned gifts for the Endowment Campaign total $610,000. Since the inception,

And in Sioux Falls, large gift and endowment growth efforts have continued successfully. Total funds raised for the Pediatric Cardiovascular Surgery Campaign are over $950,000.

Helmsley Charitable Trust The Leona M. and Harry B. Helmsley Charitable Trust awarded Sanford Health $2.4 million for the purchase and installation of robotic-assisted technology to aid cardiologists in placing stents and balloons in patients with coronary artery disease (CAD). This new equipment will be installed in two locations: Sanford Heart Hospital in Sioux Falls and Sanford Aberdeen Medical Center. As an additional part of this implementation, a telepresence will be established from Aberdeen to Sioux Falls, allowing cardiologists in Sioux Falls to have a direct connection to their colleagues in Aberdeen during a catheterization lab heart procedure. The Helmsley Charitable Trust Rural Healthcare Program has also provided support for:   • Healthcare Self-Determination in the Lower Brule Sioux Tribe   • Digital Mammography – Worthington, Webster, Canby, Winner, Chamberlain   • eICU – Bismarck

Edith Sanford Breast Cancer The mission of the Edith Sanford Breast Cancer Foundation is to unlock each woman’s genetic code to advance today’s prevention and treatment, and end breast cancer for future generations. Sanford’s

multi-faceted approach combines the clinical excellence of Edith Sanford Breast Health provided across the region, Sanford Research capabilities and infrastructure and the development of dynamic clinical and research facilities. The Edith Sanford Breast Cancer Foundation supports these important activities. To date, approximately 50,000 donors have provided donations collectively surpassing $1 million, and more than 350 of these individuals have given gifts of $100 or more. For more information, visit

Childhood Nutrition and Fitness Initiatives (fit)

team kicked off the second semester with an overwhelming response and extra sessions were added to accommodate additional students.

and support up to four providers. Located in Kojokrom, a second clinic follows the “micro” clinic model with 1,200 square feet and two exam/ consult rooms with one provider.

Sanford Health Plan

The third Ghana clinic opened in August in Adenta. The 7,600 squarefoot facility is located on the northern end of the capital city, Accra, and accommodates four providers. Sanford also opened a 4,450 squarefoot clinic in Mankessim, Ghana. This clinic includes six exam rooms and two recovery areas used to treat dehydrated malaria patients. The clinic opened in late October 2012 and supports up to four providers. The World Clinic team has secured the land for a fifth location to be constructed in Kosoa. Construction begins in March.

Sanford Health Plan now provides coverage for more than 83,000 members. This includes 28,000 commercial, nearly 6,000 individual members, 2,500 Medicare and 46,000 third-party administrator members. The Health Plan is focusing on a series of primary projects, including analyzing requirements and potentially supporting the development of health insurance exchanges, converting to a new IT system to support new regulatory requirements, and working to implement changes related to the Patient Protection Act.

Sanford’s fit program combines educational tools and materials in Food, Mood, Move and Recharge to create a comprehensive child health platform. Based preliminarily online, these activities can be found at The online sites host over 700 pieces of engaging content, and utilization of the sites is increasing. A few key metrics:   • 1.5 million parents have visited the Raising fit Kids site at   • 2.5 million kids have participated in the fit sites at   • 100,000 teachers have visited new “fit 4 the classroom” teacher resources at Across Sanford communities, schools and daycares continue to embrace fit. Fit-Care training has now been attended by nearly 500 childcare providers. A classroom component is being piloted in three different schools and will be made widely available across the Sanford region for the next school year. The after-school fit Club program just completed its first semester pilot with resounding participation and results. The fit

Klamath Falls, Oregon The Sanford Children’s Clinic in Klamath Falls opened on October 1, 2012 and hosted a successful rollout of the Epic EMR platform. The clinic has experienced a growing patient base and is working to build community awareness of the new castle of care.

Sanford World Clinic, Mankessim, Ghana

Sanford World Clinics Sanford Health’s global commitment to the development of Pediatric clinics in areas of need, and sustainable permanent healthcare infrastructure in developing nations, continues to grow and evolve.

Ghana The Cape Coast clinic sees more than 1,100 patients per week with two and a half physicians in support. The World Clinic team is working to improve the patient experience in Cape Coast, and is expanding the clinic’s capacity to include six exam rooms

Sanford Children’s Clinic, Klamath Falls, OR

Sanford World Clinic’s sites in Oceanside, California, and Duncan, Oklahoma, continue to grow and meet the needs of local children. Oceanside saw a record-number of patients in January; and Duncan, Sanford World Clinic’s first clinic, will celebrate its fourth anniversary in May.  | 7 

Introducing Sanford Discoveries, a new quarterly publication for Sanford employees and friends of the organization, covering Sanford’s Development and Research activities and the Sanford Initiatives.

events March 14: Sanford Community Lecture Series Sam Kean, Author and SD Native 5:30-6:30 p.m.

April 11: Sanford Community Lecture Series

H. Eugene Hoyme, MD, Chief Academic Officer, Sanford Health; President and Senior Scientist, Sanford Research 5:30-6:30 p.m.

April 29: JDRF Annual Research Update May 16: Fourth Annual Sanford Health USD Biomedical Research Symposium June 11- 12: Native American Health Summit June 8: 2013 It’s All About Science Festival for children and families 9 a.m.-5 p.m.

give. If you are interested in providing philanthropic support for any of the research or major initiatives featured in this publication, please contact the Sanford Health Foundation. Thank you. Sioux Falls Region: (605) 328-5700 Fargo Region: (701) 234-6246 Bismarck Region: (701) 323-8450 Bemidji Region: (218) 333-5515

July 13: 2013 American Diabetes Association Tour de Cure October 11: Sanford Genetics and Genomic Medicine Symposium *Unless otherwise noted, all events will be located at the Sanford Center, 2301 East 60th Street North, Sioux Falls, SD 57104

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Winter 2013  
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