Establishing a Database of People With Sickle Cell Disease (Comprehensive Sickle Cell Centers Collaborative Data Project [C-Data]) (C-Data)
Comprehensive Sickle Cell Centers Collaborative Data Project (C-Data)
Descripción general del estudio
Estado
Condiciones
Descripción detallada
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.
Tipo de estudio
Inscripción (Actual)
Contactos y Ubicaciones
Ubicaciones de estudio
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California
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Oakland, California, Estados Unidos, 94609
- Children's Hospital of Oakland
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San Francisco, California, Estados Unidos, 94134
- University of California, San Francisco
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Florida
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Miami, Florida, Estados Unidos, 33136
- University of Miami
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Kentucky
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Louisville, Kentucky, Estados Unidos, 40202
- Kosair Children's Hospital
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Massachusetts
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Boston, Massachusetts, Estados Unidos, 02118
- Boston Medical Center
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Boston, Massachusetts, Estados Unidos, 02115
- Brigham & Women's Hospital
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Boston, Massachusetts, Estados Unidos, 02115
- Children's Hospital of Boston
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New York
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Bronx, New York, Estados Unidos, 10463
- Montefiore Medical Center
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North Carolina
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Chapel Hill, North Carolina, Estados Unidos, 27599
- University of North Carolina-Chapel Hill
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Durham, North Carolina, Estados Unidos, 27710
- Duke University
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Ohio
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Cincinnati, Ohio, Estados Unidos, 45229
- Cincinnati Children's Hospital
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Oklahoma
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Oklahoma City, Oklahoma, Estados Unidos, 73104
- University of Oklahoma Health Sciences
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Pennsylvania
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Philadelphia, Pennsylvania, Estados Unidos, 19104
- Children's Hospital of Philadelphia
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Philadelphia, Pennsylvania, Estados Unidos, 19107
- Thomas Jefferson University Hospital
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Philadelphia, Pennsylvania, Estados Unidos, 19134
- St. Christopher's Hospital for Children
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Tennessee
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Memphis, Tennessee, Estados Unidos, 38105
- Saint Jude Children's Hospital
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Texas
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Dallas, Texas, Estados Unidos, 75235
- Children's Medical Center of Dallas
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Dallas, Texas, Estados Unidos, 75235
- University of Texas Southwestern and Parkland
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Galveston, Texas, Estados Unidos, 77555
- University of Texas at Galveston
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Criterios de participación
Criterio de elegibilidad
Edades elegibles para estudiar
- Niño
- Adulto
- Adulto Mayor
Acepta Voluntarios Saludables
Géneros elegibles para el estudio
Método de muestreo
Población de estudio
Descripción
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
Plan de estudios
¿Cómo está diseñado el estudio?
Detalles de diseño
Colaboradores e Investigadores
Patrocinador
Investigadores
- Investigador principal: Susi Lieff, PhD, Statistics and Data Management Center (SDMC) (RhoFed)
Fechas de registro del estudio
Fechas importantes del estudio
Inicio del estudio
Finalización primaria (Actual)
Finalización del estudio (Actual)
Fechas de registro del estudio
Enviado por primera vez
Primero enviado que cumplió con los criterios de control de calidad
Publicado por primera vez (Estimar)
Actualizaciones de registros de estudio
Última actualización publicada (Estimar)
Última actualización enviada que cumplió con los criterios de control de calidad
Última verificación
Más información
Términos relacionados con este estudio
Palabras clave
Términos MeSH relevantes adicionales
Otros números de identificación del estudio
- 1401
- U54HL070587-05 (Subvención/contrato del NIH de EE. UU.)
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Ensayos clínicos sobre Anemia de células falciformes
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