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A 5-year, Prospective, Non-interventional, Multicenter Registry in Sickle Cell Disease Patients

2 Years
Open (Enrolling)
Sickle Cell Disease

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Trial Information

A 5-year, Prospective, Non-interventional, Multicenter Registry in Sickle Cell Disease Patients

Inclusion Criteria:

- Male or female patients with HbSS, HbS/beta-thalassemia and HbSC

- Age > 2 years old.

- Written informed consent by the patient or legal guardians, and pediatric assent
where indicated.

Exclusion Criteria:

- Patients with Sickle Cell trait (HbAS) are not eligible for the study

- Patient or legal guardians unable or unwilling to give consent, or pediatric assent
where indicated.

Type of Study:


Study Design:

Observational Model: Cohort, Time Perspective: Prospective

Outcome Measure:

Document current treatment patterns, natural history and outcomes in patients with sickle cell disease

Outcome Time Frame:

up to 5 years

Safety Issue:


Principal Investigator

Novartis Pharmaceuticals

Investigator Role:

Study Director

Investigator Affiliation:

Novartis Pharmaceuticals


United States: Institutional Review Board

Study ID:




Start Date:

January 2010

Completion Date:

January 2017

Related Keywords:

  • Sickle Cell Disease
  • sickle cell disease
  • iron over load
  • Anemia, Sickle Cell



West Michigan Cancer Center Kalamazoo, Michigan  49007-3731
Tulane University School of Medicine New Orleans, Louisiana  70112
Newark Beth Israel Medical Center Newark, New Jersey  07112
Children's Mercy Hospital Kansas City, Missouri  64108
Miami Children's Hospital Miami, Florida  33155-4069
All Children's Hospital St. Petersburg, Florida  33701
Maimonides Medical Center Brooklyn, New York  11219
Howard University Washington, District of Columbia  20059
Research Medical Center Kansas City, Missouri  64132
Hematology Oncology, P.C. Stamford, Connecticut  06902
Hematology Oncology Services of Arkansas Little Rock, Arkansas  72205
Oncology-Hematology Associates, P.A. Clinton, Maryland  20735
Peninsula Cancer Institute Newport News, Virginia  23601
M.D. Anderson Cancer Center Orlando Orlando, Florida  32806
The Children's Medical Center of Dayton Dayton, Ohio  45404
Cincinnati Children's Medical Center Cincinnati, Ohio  45267
Broward Oncology Associates, P.A. Ft. Lauderdale, Florida  33308
Children's Hospital Oakland (CHO) Oakland, California  94609
Children's Hospital of Orange County Sickle Cell Disease Center Orange, California  92668
Rady Children's Hopsital / UC San Diego University Hospital Sickle Cell Disease Center San Diego, California  92123
Innovative Medical Research Miami, Florida  33179
Central Tampa Hematology and Oncology Associates Tampa, Florida  33607
St. Joseph Children's Hospital Tampa, Florida  33607
University of Illinois at Chicago, Dept of Pediatrics Chicago, Illinois  60612
Abington Hematology Oncology Associates, Inc Oak Lawn, Illinois  60453
LSU Department of Pediatrics Children's Hospital New Orleans, Louisiana  70118
Johns Hopkins University Division of Hematology Baltimore, Maryland  21205
Children's Hospital Boston - Harvard Boston, Massachusetts  02115
Boston Comprehensive Sickle Cell Center Boston, Massachusetts  02118
University of Missouri Child Health, Division of Pediatric Hematology/Oncology Columbia, Missouri  65212
New York Methodist Hospital Dept of Med/Sickle Cell Program Brooklyn, New York  11215
Interfaith Medical Center-Comprehensive Sickle Cell Program Brooklyn, New York  11238
Cohen Children's Medical Center of NY (CCMC) New Hyde Park, New York  11040
Center for Children's Cancer & Blood Disorders Syracuse, New York  13210
Presbyterian Hospital Pediatric Sickle Cell Program Charlotte, North Carolina  28204
Ohio Region VI Sickle Cell Program Akron, Ohio  44308
Medical University of SC-Pediatric Sickle Cell Center Charleston, South Carolina  29425
M. Francisco Gonzalez, M.D., P.A. Columbia,, South Carolina  29203
Diggs-Kraus Sickle Cell Center Memphis, Tennessee  38103
Meharry Comprehensive Sickle Cell Center Nashville, Tennessee  37208
Sickle Cell Disease and Hemoglobinopathy Clinic Children's Hospital at Vanderbilt Nashville, Tennessee  37232-6310
Baylor College of Medicine-Texas Children's Hospital Houston, Texas  77030-2399