logo Hematology/Oncology Research Studies: Open for Enrollment Date: 10/22/18

Category: SICKLE CELL DISEASE

Engaging Parents of Children with Sickle Cell Disease and their Providers in Shared-Decision Making for Hydroxyurea (ENGAGE HU)

NCT#/Phase: NCT03442114
IRB#: 2018-005
Description: This research will help us learn more about the best ways to help clinicians have a shared decision with parents about starting their child diagnosed with sickle cell disease (SCD) on hydroxyurea. We are asking children with SCD, age birth to 5 years to be a part of this research study. We want to understand what helps parents feel less uncertain and be more involved in decision making about hydroxyurea. The information collected will be from surveys and medical records.
Inclusion: Patients must be notified that they are eligible for starting hydroxyurea by their provider. This must be the first time a decision will be made about hydroxyurea. The child's caregiver, parent, or legal guardian must be able to read, understand and speak English, and participate in both study visits.
Enrollment Status: Open for enrollment
Sponsor: Patient-Centered Outcomes Research Institute
Principal Investigator(s): Lynne Neumayr, MD
Carolyn Hoppe, MD
Contact(s): Mariam Hameed (510-428-3885 x4151)

Study Link: #

UCSF Benioff Children's Hospital Oakland • 747 52nd Street, Oakland, California 94609 &bull Phone: (510) 428-3000