TY - JOUR
T1 - Use of the Rochester Epidemiology Project for Clinical Research in Colon and Rectal Surgery
AU - Lightner, Amy L.
AU - Cima, Robert
N1 - Funding Information:
The Rochester Epidemiology Project (REP), officially initiated in 1966, established a comprehensive medical records linkage system for almost all persons residing in Olmsted County, Minnesota. The REP now represents the largest passive epidemiologic database in the world. With continuous funding from the National Institute of Health (NIH) for over 40 years, the REP has been instrumental in defining the natural history of both common and rare disease and impact of treatment in an entire well-defined population. This type of longitudinal population health database is a unique in the United States where a national health system is lacking and strict confidentiality of medical information causes difficulty developing and maintaining such databases. Several obstacles were overcome to link patient-specific health information across diverse health care provider organizations to create the REP. Herein, we present the REP history, the infrastructure, the challenges in maintaining this database in the current era, and how this database has been instrumental in answering questions relevant to colon and rectal surgery.
Funding Information:
The REP has had continuous NIH funding since 1966. This federal funding is supplemented by research support from the Mayo Clinic. In 2012, the total annual REP budget was $1,370,000. National funding accounted for $770,000 and Mayo Clinic provided an additional $600,000.11
Publisher Copyright:
© 2019 by Thieme Medical Publishers, Inc.
Copyright:
Copyright 2019 Elsevier B.V., All rights reserved.
PY - 2019
Y1 - 2019
N2 - The Rochester Epidemiology Project (REP), a longitudinal population-based database, is the largest epidemiologic database in the world. Originally established at Mayo Clinic in Rochester, Minnesota, the REP has been instrumental in defining the natural history of disease states and the impact of treatment in a well-defined population. In the United States, the REP has made important contributions to the colon and rectal literature, largely because healthcare is fragmented with no unique identifier to longitudinally follow-up with a patient throughout the system over his or her lifespan. Investigation with the REP has provided insight to the economic burden associated with inflammatory bowel disease, the benefit of screening for colorectal cancer, and the natural history of Mekel's and diverticular disease. In addition to practice changing research, the REP can be used as a model for future linkage systems in the United States.
AB - The Rochester Epidemiology Project (REP), a longitudinal population-based database, is the largest epidemiologic database in the world. Originally established at Mayo Clinic in Rochester, Minnesota, the REP has been instrumental in defining the natural history of disease states and the impact of treatment in a well-defined population. In the United States, the REP has made important contributions to the colon and rectal literature, largely because healthcare is fragmented with no unique identifier to longitudinally follow-up with a patient throughout the system over his or her lifespan. Investigation with the REP has provided insight to the economic burden associated with inflammatory bowel disease, the benefit of screening for colorectal cancer, and the natural history of Mekel's and diverticular disease. In addition to practice changing research, the REP can be used as a model for future linkage systems in the United States.
KW - Rochester Epidemiology Project
KW - colon and rectal cancer
KW - diverticulitis
KW - inflammatory bowel disease
KW - population-based database
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U2 - 10.1055/s-0038-1673349
DO - 10.1055/s-0038-1673349
M3 - Article
AN - SCOPUS:85059693344
VL - 32
SP - 8
EP - 15
JO - Clinics in Colon and Rectal Surgery
JF - Clinics in Colon and Rectal Surgery
SN - 1531-0043
IS - 1
ER -