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



Status:Terminated
Conditions:Anemia
Therapuetic Areas:Hematology
Healthy:No
Age Range:Any
Updated:7/13/2016
Start Date:March 2005
End Date:September 2008

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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
We found this trial at
19
sites
Miami, Florida 33124
(305) 284-2211
University of Miami A private research university with more than 15,000 students from around the...
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75 Francis street
Boston, Massachusetts 02115
(617) 732-5500
Brigham and Women's Hosp Boston’s Brigham and Women’s Hospital (BWH) is an international leader in...
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Boston, MA
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3550 Jerome Avenue
Bronx, New York 10467
(718) 920-4321
Montefiore Medical Center As the academic medical center and University Hospital for Albert Einstein College...
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Bronx, NY
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Chapel Hill, North Carolina 27599
(919) 962-2211
University of North Carolina at Chapel Hill Carolina’s vibrant people and programs attest to the...
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Chapel Hill, NC
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Durham, North Carolina 27710
(919) 684-8111
Duke University Younger than most other prestigious U.S. research universities, Duke University consistently ranks among...
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Durham, NC
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231 E Chestnut St
Louisville, Kentucky 40202
(502) 629-6000
Kosair Children's Hospital For more than a century, Kosair Children's Hospital and its predecessor hospitals...
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Louisville, KY
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Philadelphia, Pennsylvania 19134
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Philadelphia, PA
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South 34th Street
Philadelphia, Pennsylvania 19104
 215-590-1000
Children's Hospital of Philadelphia Since its start in 1855 as the nation's first hospital devoted...
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Philadelphia, PA
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Boston, Massachusetts 02115
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Boston, MA
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Boston, Massachusetts 02118
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Cincinnati, Ohio 45229
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1935 Medical District Dr
Dallas, Texas 75235
(214) 456-7000
Children's Medical Center of Dallas Children's Medical Center is private, not-for-profit, and is the fifth-largest...
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Galveston, Texas 77555
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Memphis, Tennessee 38105
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Oakland, California 94609
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Oklahoma City, Oklahoma 73104
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Oklahoma City, OK
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111 S 11th St
Philadelphia, Pennsylvania 19107
(215) 955-6000
Thomas Jefferson University Hospital Our hospitals in Center City Philadelphia share a 13-acre campus with...
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San Francisco, California 94143
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