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

NCT00529061 | Terminated DMC

• 2 other identifiers: 1401U54HL070587-05
• Study Type: observational
• Target: 3,640
• Locations: 1 country
• Sites: 19

Brief Summary

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.

Conditions

Anemia, Sickle Cell

Keywords

Sickle Cell Disease; Sickle Cell Anemia

Eligibility Criteria

• Sex: all
• Healthy Volunteers: Yes
• Age Groups: Child (0-17), Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

All adult and pediatric patients who have been seen within the last 24 months in the hospital or clinical setting, and are expected to return episodically or regularly for care at one of the CSCCs, are eligible for inclusion in the C-Data project.

You may qualify if:

• 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

You may not qualify if:

• Deceased CSCC patient
• Inactive CSCC patient

Sponsors & Collaborators

• National Heart, Lung, and Blood Institute (NHLBI): lead

Study Sites (19)

Children's Hospital of Oakland

Oakland, California, 94609, United States

Location

University of California, San Francisco

San Francisco, California, 94134, United States

Location

University of Miami

Miami, Florida, 33136, United States

Location

Kosair Children's Hospital

Louisville, Kentucky, 40202, United States

Location

Brigham & Women's Hospital

Boston, Massachusetts, 02115, United States

Location

Children's Hospital of Boston

Boston, Massachusetts, 02115, United States

Location

Boston Medical Center

Boston, Massachusetts, 02118, United States

Location

Montefiore Medical Center

The Bronx, New York, 10463, United States

Location

University of North Carolina-Chapel Hill

Chapel Hill, North Carolina, 27599, United States

Location

Duke University

Durham, North Carolina, 27710, United States

Location

Cincinnati Children's Hospital

Cincinnati, Ohio, 45229, United States

Location

University of Oklahoma Health Sciences

Oklahoma City, Oklahoma, 73104, United States

Location

Children's Hospital of Philadelphia

Philadelphia, Pennsylvania, 19104, United States

Location

Thomas Jefferson University Hospital

Philadelphia, Pennsylvania, 19107, United States

Location

St. Christopher's Hospital for Children

Philadelphia, Pennsylvania, 19134, United States

Location

Saint Jude Children's Hospital

Memphis, Tennessee, 38105, United States

Location

Children's Medical Center of Dallas

Dallas, Texas, 75235, United States

Location

University of Texas Southwestern and Parkland

Dallas, Texas, 75235, United States

Location

University of Texas at Galveston

Galveston, Texas, 77555, United States

Location

MeSH Terms

Conditions

Anemia, Sickle Cell

Condition Hierarchy (Ancestors)

Anemia, Hemolytic, Congenital; Anemia, Hemolytic; Anemia; Hematologic Diseases; Hemic and Lymphatic Diseases; Hemoglobinopathies; Genetic Diseases, Inborn; Congenital, Hereditary, and Neonatal Diseases and Abnormalities

Study Officials

• Susi Lieff, PhD

  Statistics and Data Management Center (SDMC) (RhoFed)

  PRINCIPAL INVESTIGATOR

Study Design

• Study Type: observational
• Observational Model: COHORT
• Sponsor Type: NIH

Study Record Dates

• First Submitted: September 12, 2007
• First Posted: September 14, 2007
• Study Start: March 1, 2005
• Primary Completion: September 1, 2008
• Study Completion: September 1, 2008
• Last Updated: July 12, 2016

Record last verified: 2008-11

Locations

US (19)