The Rochester Epidemiology Project (REP) is a unique records-linkage research infrastructure that has existed since 1966, and allows for population-based

medical research Medical research (or biomedical research), also known as experimental medicine, encompasses a wide array of research, extending from "basic research" (also called ''bench science'' or ''bench research''), – involving fundamental scientif ...

in Olmsted County, Minnesota and an expanded region of 27 counties in Southern

Minnesota Minnesota () is a state in the upper midwestern region of the United States. It is the 12th largest U.S. state in area and the 22nd most populous, with over 5.75 million residents. Minnesota is home to western prairies, now given over to ...

and Western

Wisconsin Wisconsin () is a state in the upper Midwestern United States. Wisconsin is the 25th-largest state by total area and the 20th-most populous. It is bordered by Minnesota to the west, Iowa to the southwest, Illinois to the south, Lake M ...

. The project has been continually funded by the

National Institutes of Health The National Institutes of Health, commonly referred to as NIH (with each letter pronounced individually), is the primary agency of the United States government responsible for biomedical and public health research. It was founded in the late ...

since 1966. Specifically, the REP links medical data (diagnosis, procedure, prescription medication, laboratory testing) to unique persons across the many participating medical providers in the region. The project is a collaboration between Olmsted Medical Center,

Mayo Clinic The Mayo Clinic () is a nonprofit American academic medical center focused on integrated health care, education, and research. It employs over 4,500 physicians and scientists, along with another 58,400 administrative and allied health staff, ...

, Olmsted County Public Health Services, Mayo Clinic Health System, Zumbro Valley Health Center, and many other historical partners.

History

The REP was originally funded by the National Institute of General Medical Sciences in 1966 under the direction of Dr. Leonard T. Kurland, a neurologist who started his career at the NIH and moved to Olmsted County, Minnesota when he realized the great benefit to medical research that a population-based records-linkage system could have. Dr. Kurland considered Olmsted County an optimal location for such a population-based research infrastructure because the county is relatively isolated from other metropolitan centers, almost all medical care is received within the county, and all medical specialties are available to county residents. More recently, the study funding source changed to the National Institute of Arthritis and Musculoskeletal and Skin Diseases, and as of July 2010 the REP is funded by the National Institute on Aging. In September 2016, the REP celebrated 50 years of continuous NIH funding. More recently, the REP is also supported by the Mayo Clinic Research Committee and by data access fees paid annually by individual projects using the REP for their research.

The population

Original REP

The REP was originally designed to completely cover the health experience of the local population of Olmsted County, Minnesota. The REP includes the medical records of all persons who have ever lived in Olmsted County, Minnesota, from January 1, 1966 to the present, and who have given permission for their medical information to be used for research under Minnesota Research Authorization regulations. The Olmsted County population comprises more than 500,000 unique persons and more than 6 million

person-years A man-hour (sometimes referred to as person-hour) is the amount of work performed by the average worker in one hour. It is used for estimation of the total amount of uninterrupted labor required to perform a task. For example, researching and wr ...

of follow-up through 2010. Historically, the Olmsted County population is less racially diverse and is more highly educated than the US as a whole; however, it has been found to be similar to the state of Minnesota and surrounding states (

Iowa Iowa () is a state in the Midwestern region of the United States, bordered by the Mississippi River to the east and the Missouri River and Big Sioux River to the west. It is bordered by six states: Wisconsin to the northeast, Illinois to the ...

North Dakota North Dakota () is a U.S. state in the Upper Midwest, named after the Native Americans in the United States, indigenous Dakota people, Dakota Sioux. North Dakota is bordered by the Canadian provinces of Saskatchewan and Manitoba to the north a ...

, and

South Dakota South Dakota (; Sioux language, Sioux: , ) is a U.S. state in the West North Central states, North Central region of the United States. It is also part of the Great Plains. South Dakota is named after the Lakota people, Lakota and Dakota peo ...

). The Olmsted County population encompasses about 160,000 persons as of the 2020 US Decennial Census.

Expanded REP

Beginning in 2010, the linkage of electronic medical data from a region extending beyond the Olmsted County, Minnesota area became possible. In 2018, REP authors extensively described an expanded 27-county region of Southern Minnesota (19 counties:

Brown Brown is a color. It can be considered a composite color, but it is mainly a darker shade of orange. In the CMYK color model used in printing or painting, brown is usually made by combining the colors orange and black. In the RGB color model used ...

, Watonwan,

Martin Martin may refer to: Places * Martin City (disambiguation) * Martin County (disambiguation) * Martin Township (disambiguation) Antarctica * Martin Peninsula, Marie Byrd Land * Port Martin, Adelie Land * Point Martin, South Orkney Islands Austral ...

, Nicollet, Blue Earth, Faribault, Le Sueur, Waseca,

Freeborn "Freeborn" is a term associated with political agitator John Lilburne (1614–1657), a member of the Levellers, a 17th-century English political party. As a word, "freeborn" means born free, rather than in slavery or bondage or vassalage. Lilbur ...

Rice Rice is the seed of the grass species ''Oryza sativa'' (Asian rice) or less commonly ''Oryza glaberrima ''Oryza glaberrima'', commonly known as African rice, is one of the two domesticated rice species. It was first domesticated and grown i ...

Steele Steele may refer to: Places America * Steele, Alabama, a town * Steele, Arkansas, an unincorporated community * Steele, Kentucky, an unincorporated community * Steele, Missouri, a city * Lonetree, Montana, a ghost town originally called Steele ...

, Goodhue,

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Mower A mower is a person or machine that cuts (mows) grass or other plants that grow on the ground. Usually mowing is distinguished from reaping, which uses similar implements, but is the traditional term for harvesting grain crops, e.g. with reapers ...

, Olmsted, Wabasha,

Winona Winona, Wynona or Wynonna may refer to: Places Canada * Winona, Ontario United States * Winona, Arizona * Winona, Indiana * Winona Lake, Indiana * Winona, Kansas * Winona, Michigan * Winona County, Minnesota ** Winona, Minnesota, the seat of Wi ...

Fillmore Fillmore may refer to: Places Canada * Fillmore, Saskatchewan * Rural Municipality of Fillmore No. 96, Saskatchewan United States * Fillmore, California * Fillmore District, San Francisco, California * Fillmore, Louisiana * Fillmore, Illino ...

, and

Houston Houston (; ) is the most populous city in Texas, the most populous city in the Southern United States, the fourth-most populous city in the United States, and the sixth-most populous city in North America, with a population of 2,304,580 in ...

) and Western Wisconsin (8 counties:

La Crosse La Crosse is a city in the U.S. state of Wisconsin and the county seat of La Crosse County, Wisconsin, La Crosse County. Positioned alongside the Mississippi River, La Crosse is the largest city on Wisconsin's western border. La Crosse's populat ...

, Trempealeau, Buffalo, Pepin,

Eau Claire Eau Claire (French for "clear water", ''pl.'' ''eaux claires'') is the name of a number of locations and features in North America. The name is pronounced as if it were spelled "O'Clare". Place names (Canada) Communities *Eau Claire, Calgary, a n ...

, Barron, Dunn, and Chippewa) The expanded REP captures and links the medical data of nearly 700,000 persons from the year 2010 to present (about 60% of the 27-county region as compared to the US Census). The REP has created a data sharing tool called the Data Exploration Portal where researchers can explore the medical and personal characteristics of this population. The expansion of the REP to a larger region and population has also made the study of very rare conditions possible.

Scientific contributions

The REP has contributed significantly to the understanding of many diseases, including

epilepsy Epilepsy is a group of non-communicable neurological disorders characterized by recurrent epileptic seizures. Epileptic seizures can vary from brief and nearly undetectable periods to long periods of vigorous shaking due to abnormal electrical ...

rheumatoid arthritis Rheumatoid arthritis (RA) is a long-term autoimmune disorder that primarily affects joints. It typically results in warm, swollen, and painful joints. Pain and stiffness often worsen following rest. Most commonly, the wrist and hands are involv ...

osteoporosis Osteoporosis is a systemic skeletal disorder characterized by low bone mass, micro-architectural deterioration of bone tissue leading to bone fragility, and consequent increase in fracture risk. It is the most common reason for a broken bone ...

Parkinson's disease Parkinson's disease (PD), or simply Parkinson's, is a long-term degenerative disorder of the central nervous system that mainly affects the motor system. The symptoms usually emerge slowly, and as the disease worsens, non-motor symptoms becom ...

, dementia and

Alzheimer's disease Alzheimer's disease (AD) is a neurodegeneration, neurodegenerative disease that usually starts slowly and progressively worsens. It is the cause of 60–70% of cases of dementia. The most common early symptom is difficulty in short-term me ...

heart failure Heart failure (HF), also known as congestive heart failure (CHF), is a syndrome, a group of signs and symptoms caused by an impairment of the heart's blood pumping function. Symptoms typically include shortness of breath, excessive fatigue, a ...

stroke A stroke is a medical condition in which poor blood flow to the brain causes cell death. There are two main types of stroke: ischemic, due to lack of blood flow, and hemorrhagic, due to bleeding. Both cause parts of the brain to stop functionin ...

multiple myeloma Multiple myeloma (MM), also known as plasma cell myeloma and simply myeloma, is a cancer of plasma cells, a type of white blood cell that normally produces antibodies. Often, no symptoms are noticed initially. As it progresses, bone pain, an ...

, deep vein thrombosis,

multimorbidity Multimorbidity, also known as multiple long-term conditions (MLTC), means living with two or more chronic illnesses. For example, a person could have diabetes, heart disease and Depression (mood), depression at the same time. Multimorbidity can h ...

, and many others. Since its inception, the REP has supported more than 3,000 peer-reviewed

scientific publications : ''For a broader class of literature, see Academic publishing.'' Scientific literature comprises scholarly publications that report original empirical and theoretical work in the natural and social sciences. Within an academic field, scient ...

spanning almost every field of medicine.

References

External links

Rochester Epidemiology ProjectOlmsted County website
{{Medical research studies American medical research