Establishing a Database of People With Sickle Cell Disease (Comprehensive Sickle Cell Centers Collaborative Data Project [C-Data])
NCT ID: NCT00529061
Last Updated: 2016-07-12
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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TERMINATED
3640 participants
OBSERVATIONAL
2005-03-31
2008-09-30
Brief Summary
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Detailed Description
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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.
Conditions
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Study Design
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COHORT
Eligibility Criteria
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Inclusion Criteria
* 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
* Inactive CSCC patient
ALL
Yes
Sponsors
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National Heart, Lung, and Blood Institute (NHLBI)
NIH
Responsible Party
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Rho, Inc. - CSCC Statistics and Data Management Center
Principal Investigators
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Susi Lieff, PhD
Role: PRINCIPAL_INVESTIGATOR
Statistics and Data Management Center (SDMC) (RhoFed)
Locations
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Children's Hospital of Oakland
Oakland, California, United States
University of California, San Francisco
San Francisco, California, United States
University of Miami
Miami, Florida, United States
Kosair Children's Hospital
Louisville, Kentucky, United States
Brigham & Women's Hospital
Boston, Massachusetts, United States
Children's Hospital of Boston
Boston, Massachusetts, United States
Boston Medical Center
Boston, Massachusetts, United States
Montefiore Medical Center
The Bronx, New York, United States
University of North Carolina-Chapel Hill
Chapel Hill, North Carolina, 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
Children's Hospital of Philadelphia
Philadelphia, Pennsylvania, 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 Texas at Galveston
Galveston, Texas, United States
Countries
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Other Identifiers
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1401
Identifier Type: -
Identifier Source: org_study_id
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