Establishing a Database of People With Sickle Cell Disease (Comprehensive Sickle Cell Centers Collaborative Data Project [C-Data])
- Conditions
- Anemia, Sickle Cell
- Registration Number
- NCT00529061
- Brief Summary
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.
- Detailed Description
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.
Recruitment & Eligibility
- Status
- TERMINATED
- Sex
- All
- Target Recruitment
- 3640
- 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
- Deceased CSCC patient
- Inactive CSCC patient
Study & Design
- Study Type
- OBSERVATIONAL
- Study Design
- Not specified
- Primary Outcome Measures
Name Time Method
- Secondary Outcome Measures
Name Time Method
Trial Locations
- Locations (19)
Children's Hospital of Oakland
🇺🇸Oakland, California, United States
Kosair Children's Hospital
🇺🇸Louisville, Kentucky, United States
Brigham & Women's Hospital
🇺🇸Boston, Massachusetts, United States
Children's Hospital of Philadelphia
🇺🇸Philadelphia, Pennsylvania, United States
University of North Carolina-Chapel Hill
🇺🇸Chapel Hill, North Carolina, United States
Children's Hospital of Boston
🇺🇸Boston, Massachusetts, United States
Boston Medical Center
🇺🇸Boston, Massachusetts, United States
Duke University
🇺🇸Durham, North Carolina, United States
Cincinnati Children's Hospital
🇺🇸Cincinnati, Ohio, United States
University of Oklahoma Health Sciences
🇺🇸Oklahoma City, Oklahoma, United States
Thomas Jefferson University Hospital
🇺🇸Philadelphia, Pennsylvania, United States
St. Christopher's Hospital for Children
🇺🇸Philadelphia, Pennsylvania, United States
Saint Jude Children's Hospital
🇺🇸Memphis, Tennessee, United States
Children's Medical Center of Dallas
🇺🇸Dallas, Texas, United States
University of Texas Southwestern and Parkland
🇺🇸Dallas, Texas, United States
University of California, San Francisco
🇺🇸San Francisco, California, United States
University of Miami
🇺🇸Miami, Florida, United States
University of Texas at Galveston
🇺🇸Galveston, Texas, United States
Montefiore Medical Center
🇺🇸Bronx, New York, United States