title: Roadmap for the development of the University of North Carolina at Chapel Hill Genitourinary OncoLogy Database--UNC GOLD.
abstract: BACKGROUND
  The management of genitourinary malignancies requires a multidisciplinary care team composed of urologists, medical oncologists, and radiation oncologists. A genitourinary (GU) oncology clinical database is an invaluable resource for patient care and research. Although electronic medical records provide a single web-based record used for clinical care, billing, and scheduling, information is typically stored in a discipline-specific manner and data extraction is often not applicable to a research setting. A GU oncology database may be used for the development of multidisciplinary treatment plans, analysis of disease-specific practice patterns, and identification of patients for research studies. Despite the potential utility, there are many important considerations that must be addressed when developing and implementing a discipline-specific database.
  
  
  METHODS
  The creation of the GU oncology database including prostate, bladder, and kidney cancers with the identification of necessary variables was facilitated by meetings of stakeholders in medical oncology, urology, and radiation oncology at the University of North Carolina (UNC) at Chapel Hill with a template data dictionary provided by the Department of Urologic Surgery at Vanderbilt University Medical Center. Utilizing Research Electronic Data Capture (REDCap, version 4.14.5), the UNC Genitourinary OncoLogy Database (UNC GOLD) was designed and implemented.
  
  
  RESULTS
  The process of designing and implementing a discipline-specific clinical database requires many important considerations. The primary consideration is determining the relationship between the database and the Institutional Review Board (IRB) given the potential applications for both clinical and research uses. Several other necessary steps include ensuring information technology security and federal regulation compliance; determination of a core complete dataset; creation of standard operating procedures; standardizing entry of free text fields; use of data exports, queries, and de-identification strategies; inclusion of individual investigators' data; and strategies for prioritizing specific projects and data entry.
  
  
  CONCLUSIONS
  A discipline-specific database requires a buy-in from all stakeholders, meticulous development, and data entry resources to generate a unique platform for housing information that may be used for clinical care and research with IRB approval. The steps and issues identified in the development of UNC GOLD provide a process map for others interested in developing a GU oncology database.
authors: Department of Medicine, Division of Hematology and Medical Oncology, University of North Carolina, Chapel Hill, NC.
authors: Sarah A
authors: SA
authors: Gallagher
authors: Department of Surgery, Division of Urologic Surgery, University of North Carolina, Chapel Hill, NC.
authors: Angela B
authors: AB
authors: Smith
authors: Department of Surgery, Division of Urologic Surgery, University of North Carolina, Chapel Hill, NC.
authors: Jonathan E
authors: JE
authors: Matthews
authors: North Carolina Clinical and Translational Sciences Institute (NC TraCS), Chapel Hill, NC.
authors: Clarence W
authors: CW
authors: Potter
authors: Department of Surgery, Division of Urologic Surgery, University of North Carolina, Chapel Hill, NC.
authors: Michael E
authors: ME
authors: Woods
authors: Department of Surgery, Division of Urologic Surgery, University of North Carolina, Chapel Hill, NC.
authors: Mathew
authors: M
authors: Raynor
authors: Department of Surgery, Division of Urologic Surgery, University of North Carolina, Chapel Hill, NC.
authors: Eric M
authors: EM
authors: Wallen
authors: Department of Medicine, Division of Hematology and Medical Oncology, University of North Carolina, Chapel Hill, NC.
authors: W Kimryn
authors: WK
authors: Rathmell
authors: Department of Medicine, Division of Hematology and Medical Oncology, University of North Carolina, Chapel Hill, NC.
authors: Young E
authors: YE
authors: Whang
authors: Department of Medicine, Division of Hematology and Medical Oncology, University of North Carolina, Chapel Hill, NC.
authors: William Y
authors: WY
authors: Kim
authors: Department of Medicine, Division of Hematology and Medical Oncology, University of North Carolina, Chapel Hill, NC.
authors: Paul A
authors: PA
authors: Godley
authors: Department of Radiation Oncology, University of North Carolina, Chapel Hill, NC.
authors: Ronald C
authors: RC
authors: Chen
authors: Department of Radiation Oncology, University of North Carolina, Chapel Hill, NC.
authors: Andrew
authors: A
authors: Wang
authors: Department of Urologic Surgery, Vanderbilt University Medical Center, Nashville, TN.
authors: Chaochen
authors: C
authors: You
authors: Department of Urologic Surgery, Vanderbilt University Medical Center, Nashville, TN.
authors: Daniel A
authors: DA
authors: Barocas
authors: Department of Surgery, Division of Urologic Surgery, University of North Carolina, Chapel Hill, NC.
authors: Raj S
authors: RS
authors: Pruthi
authors: Department of Surgery, Division of Urologic Surgery, University of North Carolina, Chapel Hill, NC. Electronic address: mnielsen@med.unc.edu.
authors: Matthew E
authors: ME
authors: Nielsen
authors: Department of Medicine, Division of Hematology and Medical Oncology, University of North Carolina, Chapel Hill, NC. Electronic address: matt_milowsky@med.unc.edu.
authors: Matthew I
authors: MI
authors: Milowsky
mesh_terms: D000046:Academic Medical Centers; D016208:Databases, Factual; D057286:Electronic Health Records; D006801:Humans; D020407:Internet; D008490:Medical Informatics; D008495:Medical Oncology / Q000458:organization & administration; D009657:North Carolina; D016730:Program Development; D012984:Software; D014495:Universities; D014565:Urogenital Neoplasms / Q000175:diagnosis* / Q000453:epidemiology / Q000628:therapy*; D014572:Urology / Q000458:organization & administration
keywords: Clinical database; Genitourinary oncology; Oncology database; REDCap; Urologic oncology