Non-Therapeutic Protocol

SCDTDP: Data Coordination of Quality Improvement Measures: Sickle Cell Disease Treatment Demonstration Program (SCDTDP) Working to Improve Sickle Cell Healthcare (WISCH)

Type of Protocol/Clinical Study

Associated Hematology Studies : Sickle cell disease

Description

This study is intended for patients with sickle cell disease or the parents of a patient with sickle cell disease who receives or has received treatment at St. Jude Children’s Research Hospital or the Methodist University Adult Comprehensive Sickle Cell Center.

The purpose of this research study is to improve care and health outcomes for individuals with sickle cell disease with the ultimate goal of expanding these improvements to all individuals and families living with and affected by sickle cell disease.

Objectives

• To demonstrate that individuals with SCD enrolled in the demonstration program experience an improved quality of life.
• To demonstrate that individuals with SCD enrolled in the program perceive appropriate treatment and experience reduced morbidity.
• To demonstrate that the program has promoted the provision of comprehensive SCD treatment consistent with a medical home model of care.

Eligibility

• Participant has a diagnosis of Sickle Cell Disease and is 1 day to 25 years of age.
  OR
• Participant is the parent or legal guardian of the minor child who has a diagnosis of sickle cell disease.

Principal Investigator

Jane Hankins, MD

The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.