logo Hematology/Oncology Research Studies: Open for Enrollment Date: 12/12/18

Category: SICKLE CELL DISEASE

Sickle Cell Disease Implementation Consortium Registry: Collecting and Tracking Health Information for Patients with Sickle Cell Disease

NCT#/Phase: N/A
IRB#: 2017-093
Description: The SCCCI seeks to improve care provided to youth and adults with sickle cell disease in Northern California and use implementation science to improve outcomes for individuals with sickle cell disease. It aims to increase the number of youth and adults with sickle cell disease who receive preventive care; support providers so they increase their adherence with evidence based guidelines for sickle cell disease care; and support youth and adults with sickle cell disease to access needed resources within their communities to improve their quality of life and quality of care. The study is currently enrolling 300 youth and adults from Northen California with sickle cell disease into a registry to collect and track their health information.
Inclusion: Individuals between 15 - 45 years of age with a diagnosis of sickle cell disease who live in any of the following 5 counties: Alameda, Contra Costa, Sacramento, San Francisco and Solano in Northern California.
Enrollment Status: Open for enrollment
Sponsor: National Heart, Lung and Blood Institute
Principal Investigator(s): Marsha Treadwell, PhD
Elliott Vichinsky, MD
Contact(s): Teleah Slater (510-428-3691)

Study Link: http://casicklecell.org/index.php/sccci-research/

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