In any clinical research program, standardized patient care and patient data are the most fundamental and valuable resources. The Clinical and Data Management Core (CDMC) is designed to be supportive of and responsive to clinical research in a clinical environment that is increasingly dependent on electronic data. Specifically, the CDMC will create an Electronic Health Record (EHR)-based Sickle Cell Registry (SCR) to permit real time and efficient data entry at the point of contact with the patient. The CDMC recognizes and will reconcile the differing and often conflicting requirements of EHR data entered for purely clinical purposes with data entered for research. The EHR-based SCR will permit data to be entered once and jointly serve clinicaland research needs. The CDMC will create best practice standards for clinical care and clinical research using EHR-based tools for implementation and monitoring. The creation and enforcement of best practice standards will reduce well-known and avoidable barriers to care affecting the outcomes of patients with sickle cell disease. Standardization of best practices will be the cornerstone of a productive clinical research program. The expertise in the CDCM, the EHR will be an integral part of a quality-driven clinical research program in sickle cell disease. Lastly, the CDMC will aim to develop a clinical research program that has sufficient patient numbers with detailed annotation of clinical data and biospecimens to permit future involvement in multi-center cooperative group and industry-sponsored clinical research in sickle cell disease. The tools and expertise of the CDMC is applied herein to sickle cell disease. However, the EHR-based tools created and the expertise of the CDMC can be applied to any disease. The CDMC merges available expertise in Health Informations with Bioinformatics to create a fully sustainable and broadly applicable core resource. Systems to ensure EHR data accuracy, completeness and quality are a limiting factor in any clinical research program. Sustainablility of the CDMC will be assured by the application of this technology and expertise to other chronic and orphan diseases of childhood.

Public Health Relevance

Patient care and clinical research is increasingly dependent on electronic health records (EHR). Data management systems need to be responsive to both the clinical and research demands on the data for maximal efficiency and data accuracy. The Clinical and Data Management Core will create EHR-based systems to jointly meet the requirements of clinical care and clinical research.

National Institute of Health (NIH)
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Special Emphasis Panel (ZGM1)
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Alfred I. Du Pont Hosp for Children
United States
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