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LEAPS: Understanding Sickle Cell Disease Transition to Adult Care

About this study

Sickle cell disease (SCD) is the most common genetic red blood cell disorder in African Americans. Children with sickle cell disease experience chronic, severe pain and can develop life-threatening complications.

Thanks to new treatments, patients with SCD are living longer. However, they often find it tough to transition from pediatric to adult health care providers.

Health care transition programs help prepare patients for adult-centered care. These programs help adult patients with sickle cell disease improve their health and decrease the overall death rate.

In this study, researchers will follow a group of teens and young adults with sickle cell disease over a 2-year period. Patients will complete surveys about SCD knowledge and disease management, general adjustment and quality of life to help researchers identify ways to improve the transition process.

Eligibility overview

  • Diagnosis of sickle cell disease
  • 16 to 20 years old
  • English is primary language

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Overview

Full title:

Longitudinal Examination of Predictors and Outcomes of Sickle Cell Disease Health Care Transition

Study goal:

The main goal of this study is to find out what a successful health care transition looks like and to look at connections between health care transition and factors such as hospitalizations, patients’ disease knowledge and general adjustment. Researchers also want to know how these factors change over time.

Diagnosis:

Sickle cell disease

Age:

16 to 20 years old

Clinical trials categories:

Blood Disorders Sickle Cell Disease

For physicians and researchers

Patients accepted to St. Jude must be referred by a physician or other qualified medical professional. Learn how St. Jude can partner with you to care for your patient.

 

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