Study Enrollment

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Clinical Trial

Sickle Cell Disease Implementation Consortium (SCDIC) Registry

The purpose of the Sickle Cell Disease Implementation Consortium (SCDIC) is to use implementation science to identify and address barriers to quality care in sickle cell disease (SCD). The Registry was created to collect information on the medical history, management and access to care for people with Sickle Cell Disease (SCD). The Registry will develop standard data collection tools and methods which will be used to characterize the SCD population leading to the development and implementation of research studies; identify gaps in research; conduct data queries and analyze data collected; provide access to these resources to Registry investigators who are interested in advancing the understanding of the SCD population; and publish and disseminate results.

Eligibility Criteria

  • Inclusion Age 15 years up to 45 years (i.e. 44 years 11 months) English Speaking Confirmed SCD diagnosis. Confirmed is defined as supported by documentation in the medical record of a positive test for one of the following: Hb SS, Hb SC, Hb S?-thalassemia, Hb SO, Hb SD, Hb SG, Hb SE, Hb SF. If no medical record is available, the enrolling center may conduct its own laboratory test as confirmation. Willing and cognitively able to give informed consent and complete the patient enrollment survey Exclusion Unwilling or unable to give consent/assent or complete the patient enrollment survey Sickle Cell trait (Hb AS) Sucessful bone marrow transplant

Contact Information

    Latanya Bowman, RN

    (706) 721-2171