Rochester Epidemiology Project

The Rochester Epidemiology Project (REP) is a unique records-linkage research infrastructure that has existed since 1966, and allows for population-based medical research in Olmsted County, Minnesota and an expanded region of 27 counties in Southern Minnesota and Western Wisconsin. The project has been continually funded by the National Institutes of Health 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, Olmsted County Public Health Services, Mayo Clinic Health System, Zumbro Valley Health Center, and many other historical partners.

Rochester Epidemiology Project
AbbreviationREP
Formation1966
Type
  • Community-based health research project
  • Records-linkage system
Legal statusNIH-funded project
PurposeResearch
Location
  • Rochester, Minnesota
Region served
  • Southern Minnesota
  • Western Wisconsin
Principal Investigators
  • Walter A. Rocca, MD, MPH
  • Jennifer St. Sauver, PhD, MPH
Websiterochesterproject.org

History

The REP was originally funded by the National Institute of General Medical Sciences in 1966 under the direction of Dr. Leonard T. Kurland,[1] 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.[2][3][4][5] 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.[4] 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.[3] In September 2016, the REP celebrated 50 years of continuous NIH funding.[6] 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.[7]

The population

Original REP

The REP was originally designed to completely cover the health experience of the local population of Olmsted County, Minnesota.[4] 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.[8] The Olmsted County population comprises more than 500,000 unique persons and more than 6 million person-years of follow-up through 2010.[2][9] 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 (Wisconsin, Iowa, North Dakota, and South Dakota).[10] 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, Watonwan, Martin, Nicollet, Blue Earth, Faribault, Le Sueur, Waseca, Freeborn, Rice, Steele, Goodhue, Dodge, Mower, Olmsted, Wabasha, Winona, Fillmore, and Houston) and Western Wisconsin (8 counties: La Crosse, Trempealeau, Buffalo, Pepin, Eau Claire, Barron, Dunn, and Chippewa)[11] 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).[11] 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.[12][13] The expansion of the REP to a larger region and population has also made the study of very rare conditions possible.[14]

Scientific contributions

The REP has contributed significantly to the understanding of many diseases, including epilepsy,[15] rheumatoid arthritis,[16] osteoporosis,[17] Parkinson's disease,[18] dementia and Alzheimer's disease,[19] heart failure,[20] stroke,[21] multiple myeloma,[22] deep vein thrombosis,[23] multimorbidity,[24][25] and many others. Since its inception, the REP has supported more than 3,000 peer-reviewed scientific publications spanning almost every field of medicine.[6][7]

References
  1. Whisnant JP; Mulder DW. (2002). "Leonard T. Kurland: 1921-2001". Annals of Neurology. 51 (5): 663. doi:10.1002/ana.10183. PMID 12112123.
  2. St Sauver JL; Grossardt BR; Yawn BP; Melton LJ 3rd; Pankratz JJ; Brue SM; Rocca WA. (2012). "Data Resource Profile: The Rochester Epidemiology Project (REP) medical records-linkage system". Int J Epidemiol. 41 (6): 1614–24. doi:10.1093/ije/dys195. PMC 3535751. PMID 23159830.
  3. Rocca WA; Yawn BP; St Sauver JL; Grossardt BR; Melton LJ. (2012). "History of the Rochester Epidemiology Project: Half a Century of Medical Records Linkage in a US Population". Mayo Clin. Proc. 87 (12): 1202–13. doi:10.1016/j.mayocp.2012.08.012. PMC 3541925. PMID 23199802.
  4. Melton LJ III. (1996). "History of the Rochester Epidemiology Project". Mayo Clin. Proc. 71 (3): 266–274. doi:10.4065/71.3.266. PMID 8594285.
  5. Kurland LT; Molgaard CA. (1981). "The patient record in epidemiology". Scientific American. 245 (4): 54–63. Bibcode:1981SciAm.245d..54K. doi:10.1038/scientificamerican1081-54. PMID 7027437.
  6. Boese Brett (27 September 2016). "A 'hidden gem' at Mayo celebrates 50 years". PostBulletin. Retrieved 3 October 2016.
  7. "Rochester Epidemiology Project: About Us". Rochester Epidemiology Project. Retrieved 26 May 2022.
  8. "What Consent? - MN's Medical & Genetic Research Law" (PDF). February 2005. Archived from the original (PDF) on October 21, 2013. Retrieved December 14, 2012.
  9. St Sauver JL; Grossardt BR; Yawn BP; Melton LJ 3rd; Rocca WA. (2011). "Use of a medical records linkage system to enumerate a dynamic population over time: the Rochester epidemiology project". Am J Epidemiol. 173 (9): 1059–68. doi:10.1093/aje/kwq482. PMC 3105274. PMID 21430193.
  10. St Sauver JL; Grossardt BR; Leibson CL; Yawn BP; Melton LJ 3rd; Rocca WA. (2012). "Generalizability of epidemiological findings and public health decisions: an illustration from the Rochester Epidemiology Project". Mayo Clin. Proc. 87 (2): 151–60. doi:10.1016/j.mayocp.2011.11.009. PMC 3538404. PMID 22305027.
  11. Rocca WA; Grossardt BR; Brue SM; Bock-Goodner CM; Chamberlain AM; Wilson PM; Finney Rutten LJ; St Sauver JL. (2018). "Data Resource Profile: Expansion of the Rochester Epidemiology Project medical records-linkage system (E-REP)". Int J Epidemiol. 47 (2): 368–368j. doi:10.1093/ije/dyx268. PMC 5913632. PMID 29346555.
  12. St Sauver JL; Grossardt BR; Finney Rutten LJ; Roger VL; Majerus M; Jensen DW; Brue SM. (2018). "Rochester Epidemiology Project Data Exploration Portal". Int J Epidemiol. 15: E42. doi:10.5888/pcd15.170242. PMC 5912927. PMID 29654640.
  13. "Rochester Epidemiology Project: Data Exploration Portal". REP Data Exploration Portal. Retrieved 26 May 2022.
  14. Naddaf E; Shelly S; Mandrekar J; Chamberlain AM; Hoffman EM; Ernste FC; Liewluck T. (2022). "Survival and associated comorbidities in inclusion body myositis". Rheumatology (Oxford). 61 (5): 2016–2024. doi:10.1093/rheumatology/keab716. PMC 9071572. PMID 34534271.
  15. Wirrell EC; Grossardt BR; Wong-Kisiel LC; Nickels KC. (2011). "Incidence and classification of new-onset epilepsy and epilepsy syndromes in children in Olmsted County, Minnesota from 1980 to 2004: a population-based study". Epilepsy Res. 95 (1–2): 110–118. doi:10.1016/j.eplepsyres.2011.03.009. PMC 3260338. PMID 21482075.
  16. Maradit Kremers H; Crowson CS; Gabriel SE. (2004). "Rochester Epidemiology Project: A unique resource for research in the rheumatic diseases". Rheum Dis Clin N Am. 30 (4): 819–34. doi:10.1016/j.rdc.2004.07.010. PMID 15488695.
  17. Richelson LS; Wahner HW; Melton LJ III; Riggs BL. (1984). "Relative contributions of aging and estrogen deficiency to postmenopausal bone loss". N Engl J Med. 311 (20): 1273–5. doi:10.1056/NEJM198411153112002. PMID 6493283.
  18. Savica R; Grossardt BR; Bower JH; Ahlskog JE; Rocca WA. (2016). "Time Trends in the Incidence of Parkinson Disease". JAMA Neurology. 73 (8): 981–989. doi:10.1001/jamaneurol.2016.0947. PMC 5004732. PMID 27323276.
  19. Roberts RO; Geda YE; Knopman DS; Cha RH; Pankratz VS; Boeve BF; Tangalos EG; Ivnik RJ; Rocca WA; Petersen RC (2012). "The incidence of MCI differs by subtype and is higher in men: The Mayo Clinic Study of Aging". Neurology. 78 (5): 342–351. doi:10.1212/WNL.0b013e3182452862. PMC 3280046. PMID 22282647.
  20. Hellermann JP; Goraya TY; Jacobsen SJ; Weston SA; Reeder GS; Gersh BJ; Redfield MM; Rodeheffer RJ; Yawn BP; Roger VL. (2003). "Incidence of heart failure after myocardial infarction: Is it changing over time?". Am J Epidemiol. 157 (12): 1101–7. doi:10.1093/aje/kwg078. PMID 12796046.
  21. Whisnant JP; O'Fallon WM; Sicks J; Ingall T. (1993). "Stroke incidence with hypertension and ischemic heart disease in Rochester, Minnesota". Annals of Epidemiology. 3 (5): 480–2. doi:10.1016/1047-2797(93)90100-i. PMID 8167822.
  22. Kyle RA; Therneau TM; Rajkumar SV; Larson DR; Plevak MF; Melton LJ III (2004). "Incidence of multiple myeloma in Olmsted County, Minnesota: Trend over 6 decades". Cancer. 101 (11): 2667–74. doi:10.1002/cncr.20652. PMID 15481060. S2CID 36502921.
  23. Silverstein MD; Heit JA; Mohr DN; Petterson TM; O’Fallon WM; Melton LJ 3rd. (1998). "Trends in the incidence of deep vein thrombosis and pulmonary embolism: a 25-year population-based study". Arch. Intern. Med. 158 (6): 585–593. doi:10.1001/archinte.158.6.585. PMID 9521222.
  24. St Sauver JL; Boyd CM; Grossardt BR; Bobo WV; Finney Rutten LJ; Roger VL; Ebbert JO; Therneau TM; Yawn BP; Rocca WA. (2015). "Risk of developing multimorbidity across all ages in an historical cohort study: differences by sex and ethnicity". BMJ Open. 5 (2): e006413. doi:10.1136/bmjopen-2014-006413. PMC 4322195. PMID 25649210.
  25. Rocca WA; Grossardt BR; Boyd CM; Chamberlain AM; Bobo WV; St Sauver JL. (2021). "Multimorbidity, ageing and mortality: normative data and cohort study in an American population". BMJ Open. 11 (3): e042633. doi:10.1136/bmjopen-2020-042633. PMC 7986688. PMID 33741663.
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