Report

Sickle Cell Disease Treatment Demonstration Program Congressional Report 2014

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Recommendations for improving care for people with sickle cell disease.

This report to Congress synthesizes the results and recommendations of four years of the Sickle Cell Disease Treatment Demonstration Program (one part of NICHQ’s Working to Improve Sickle Cell Healthcare project).

The Congressional Report recommendations address several different levels of action:

  1. Recommendations for clinical delivery and public health programs
  2. Recommendations for the design or re-design of the Sickle Cell Disease Treatment Demonstration Program
  3. Recommendations for broad health policy
Download
SCDTDP Congressional Report Oct 2014 - Full Report | PDF | 3 MB
Download
SCDTDP Congressional Report Oct 2014 - Executive Summary | PDF | 583 KB
Download
SCDTDP Model Protocol Oct 2014 | PDF | 6 MB

Details

Date published: October 13, 2014
Authors: Bill Adams, MD, Professor of Pediatrics, Boston University School of Medicine; Director of Clinical Research Informatics, Boston University Clinical and Translational Science Institute Elissa Faro, PhD, Senior Research and Knowledge Manager, NICHQ Patricia Finnerty, MPH, Associate Project Director, NICHQ Charlie J. Homer, MD, MPH, Chief Executive Officer and Project Executive, NICHQ Elisa Mai, Project Manager and Grant Specialist, NICHQ Amanda Norton, MSW, Improvement Advisor Suzette Oyeku, MD, MPH, Strategic Project Director, NICHQ; Associate Professor of Clinical Pediatrics, Albert Einstein College of Medicine Rachel Vanderkruik, MSc, Analyst, NICHQ C. Jason Wang, MD, PhD, Associate Professor of Pediatrics, Director of Center for Policy, Outcomes, Prevention, Stanford School of Medicine