An observational study in Sickle Cell Disease, sponsored by Novartis. Completed at 42 sites in United States. Open to participants aged 2 Years and older. Per ClinicalTrials.gov, last updated 2019-12-09.
Sponsored by Novartis · Observational
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.
1,103 studies on the registry are indexed under Anemia, Sickle Cell; 235 are open to participants now.
This study's enrollment of 498 is above the median of 100 across 287 observational studies indexed under Anemia, Sickle Cell.
Browse Anemia, Sickle Cell studies →Novartis is the lead sponsor of 703 studies on the registry; none are open to participants now.
Counted across the registry records on this site, refreshed daily.
Patients with Sickle cell disease age 2 years and older
Exclusion Criteria:
Patients aged 2 to less than 12
Patients aged 12 to less than 18
patients greater than 18 years
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
This study is completed, as verified in May 2015. You cannot join it, but the record below documents what was studied.
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Novartis