Sickle Cell Disease Clinical Data Collection Platform

and sustainability of these approaches. This particular grant aligns with the following priorities of the Assistant Secretary for Health: Sickle Cell Disease; Health Transformation; Health Opportunity; Health Innovation and the following HHS Strategic Goals: Strategic Goal 1: Reform, Strengthen, and Modernize the Nation's Healthcare System; Strategic Goal 2: Protect the Health of Americans Where They Live, Learn, Work, and Play; and Strategic Goal 4: Foster Sound, Sustained Advances in the Sciences.2 This initiative is intended to ultimately improve the lives of patients with SCD, most of whom are racial/ethnic minorities, by improving clinical care delivery and thus aligns directly with OMH’s mission. The Sickle Cell Disease Clinical Data Collection Platform initiative is designed to determine whether a standardized clinical data collection platform, shared across medical centers and other healthcare facilities, can serve as a central repository for analyzing data from large patient cohorts, recruiting patients for clinical trials, assessing adherence to evidence-based clinical guidelines, and identifying new areas for research. OMH expects the successful applicant to plan, design and develop the data collection platform; develop a plan to align and integrate the platform with clinical care sites; define criteria for participating pilot sites; identify and recruit hub and satellite sites to pilot the shared platform; create and manage a collaborative learning community; evaluate utilization of the data collection platform; and develop dissemination and sustainability plans. When fully developed, OMH expects that the platform will be made widely available to healthcare providers who treat patients with SCD and researchers.