A long term observational study in sickle cell disease will enhance the understanding of the disease patterns, current transfusion practices, treatments and outcomes in sickle cell disease.
Study Type
OBSERVATIONAL
Enrollment
498
Document current treatment patterns, natural history and outcomes in patients with sickle cell disease
Time frame: up to 5 years
Data collection
Collection of the following data:Current therapies used for the treatment of SCD Current transfusion practices, Difference in treatments between pediatric and adult patients, Use of chelation therapies, Frequency and types of crises including Frequency of hospitalizations, Incidence of end organ damage (caridac, renal, pulmonary,liver), Quality of life assessed by PedsQL TM Pediatric Quality of Life Inventory for patients 2- \<18 years old and SF-36® Health Survey for patients 18 years old and older
Time frame: up to 5 years
Measure Sickle cell crisis and hospitalizations
To evaluate whether patients on regular transfusion protocol have fewer crisis and hospitalizations
Time frame: up to 5 years
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Hematology Oncology Services of Arkansas
Little Rock, Arkansas, United States
Children's Hospital Oakland (CHO)
Oakland, California, United States
Children's Hospital of Orange County Sickle Cell Disease Center
Orange, California, United States
Rady Children's Hopsital / UC San Diego University Hospital Sickle Cell Disease Center
San Diego, California, United States
Hematology Oncology, P.C.
Stamford, Connecticut, United States
Howard University
Washington D.C., District of Columbia, United States
Broward Oncology Associates, P.A.
Fort Lauderdale, Florida, United States
Miami Children's Hospital
Miami, Florida, United States
Innovative Medical Research
Miami, Florida, United States
M.D. Anderson Cancer Center Orlando
Orlando, Florida, United States
...and 32 more locations