Establishing a Repository of Blood and DNA Samples From People With Sickle Cell Disease (Comprehensive Sickle Cell Centers Collaborative Genotype-Phenotype Database and Sample Repository)

SCD is an inherited blood disorder that is caused by an abnormal type of hemoglobin.
Symptoms include anemia, infections, organ damage, and intense episodes of pain, which are
called "sickle cell crises." The Comprehensive Sickle Cell Centers (CSCC) is a network of 10
centers that conduct research to improve health care and treatment options for people with
SCD. The Collaborative Data Project (C-Data) is a CSCC study that is establishing a
comprehensive database of children and adults with SCD who are receiving medical care at
participating CSCC research centers. This study will initiate the development of a
centralized laboratory that will collect, test, and archive blood and DNA samples from
participants in the C-Data project for use in future SCD studies. The collection of blood
and DNA samples will provide researchers with an important resource to better define the
genetic diversity of SCD. In the future, genotype-phenotype correlation studies, population
studies, and various other genetic studies may be conducted.

This study will enroll participants taking part in the C-Data project. For this study,
participants will undergo a blood collection. The blood sample will then be sent to a lab to
characterize the red blood cells and hemoglobin. DNA will be analyzed to identify genes that
influence the severity of SCD. Blood and DNA will be stored for future genetic research in
SCD and closely related disorders.

Inclusion Criteria:

- Participating in the C-Data project

Exclusion Criteria:

- Unable to undergo blood collection