Establishing a Database of People With Sickle Cell Disease (Comprehensive Sickle Cell Centers Collaborative Data Project [C-Data])

SCD is an inherited blood disorder. 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. This study, the Collaborative Data Project
(C-Data), will establish a comprehensive database of children and adults receiving medical
care at participating CSCC research centers who are potentially eligible for inclusion in
SCD clinical trials. The main purposes of this study are the following: 1) to gather medical
information about a large number of people with SCD over a long period of time; 2) to
identify potential participants for future SCD clinical trials; 3) to collect information
about how SCD affects quality of life; and 4) to evaluate the relationship between SCD
patients' characteristics and medical events.

In this study, research staff will review participants' medical records twice a year for at
least 5 years. Information will be collected regarding participants' medical history,
physical exams, blood tests, and demographics. Once a year, participants will take part in a
short interview about their health and lifestyle. Participants will also complete
quality-of-life and patient satisfaction questionnaires during the first year of the study
and may complete additional questionnaires in the future. During an interview, participants
will be asked general questions about their experience with SCD and more specific questions
on headaches and any possible relation they may have to SCD pain. Participants may also be
asked to provide a blood sample at some point during the study. CSCC researchers will
analyze the information in the database and may contact participants in the future to see if
they are interested in enrolling in SCD clinical trials.

Inclusion Criteria:

- Diagnosis of SCD

- Evaluated within the 24 months prior to study entry in the hospital or clinical
setting

- Expected to return episodically or regularly for care at one of the CSCCs

Exclusion Criteria:

- Deceased CSCC patient

- Inactive CSCC patient