Establishing a Database of People With Sickle Cell Disease (Comprehensive Sickle Cell Centers Collaborative Data Project [C-Data])
Establishing a Database of People With Sickle Cell Disease (Comprehensive Sickle Cell Centers Collaborative Data Project [C-Data])
Sickle cell disease (SCD), also known as sickle cell anemia, is an inherited blood disease
 that can cause intense pain episodes. The purpose of this study is to gather medical
 information from children and adults with SCD and establish a database so that researchers
 can contact people to participate in future SCD research studies.
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