Globin Research Network for Data and Discovery

Project Rationale

Sickle cell disease is a genetic disorder caused by a single base substitution of valine for a glutamine at the sixth amino acid of the gene encoding for the hemoglobin β chain. Individuals living with sickle cell disease or other associated hemoglobinopathies suffer from a variety of clinical complications related to this abnormal hemoglobin.

These clinical manifestations include hemolytic anemia and painful or vaso-occlusive crisis that occurs when sludging in the microcirculation causes tissue hypoxia. Although sickle cell disease is considered an inflammatory state, little is understood about how different inflammatory markers associate with different phenotypes of the disease.  The successful characterization of biomarkers in sickle cell disease may prove to be helpful in risk-stratifying patients and could be a powerful tool in clinical trials of new therapies.

GRNDaD is a multisite registry developed by internationally recognized physicians who take care of both children and adults with sickle cell disease. GRNDaD also collects patient reported outcomes including surveys on health-related quality of life and information on pain and fatigue. Another major goal of GRNDaD is to use the data collected for quality improvement and assess how sickle cell centers are doing adhering to guideline recommendations. We then will use this information to develop appropriate interventions to improve adherence to recommendations which will lead to improved outcomes for this population.

Project Goals

  • The goal is to collect longitudinal data on a cohort of people living with sickle cell disease to better understand how clinical characteristics predict outcomes.

  • The local registry (at UAB) is used to follow individuals with SCD clinically, ensure they are up to date on preventative tests and treatments and monitor the effects of new therapies.

  • To develop a repository for the long-term storage of patient samples (whole blood, peripheral blood, serum) along with corresponding demographic and clinical information to allow for clinic and laboratory correlations

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Contact Us

Julie Kanter, MD (contact PI)

Emily Warner (Program Director)

Molly Lerew (Grant Administrator)

Nicky Staton (Site Coordinator)