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)
연구 개요
상태
상태
정황
정황
상세 설명
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.
연구 유형
연구 유형
등록 (실제)
등록
연락처 및 위치
연구 장소
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California
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Oakland, California, 미국, 94609
- Children's Hospital of Oakland
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San Francisco, California, 미국, 94134
- University of California, San Francisco
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Florida
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Miami, Florida, 미국, 33136
- University of Miami
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Kentucky
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Louisville, Kentucky, 미국, 40202
- Kosair Children's Hospital
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Massachusetts
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Boston, Massachusetts, 미국, 02118
- Boston Medical Center
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Boston, Massachusetts, 미국, 02115
- Brigham & Women's Hospital
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Boston, Massachusetts, 미국, 02115
- Children's Hospital of Boston
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New York
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Bronx, New York, 미국, 10463
- Montefiore Medical Center
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North Carolina
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Chapel Hill, North Carolina, 미국, 27599
- University of North Carolina-Chapel Hill
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Durham, North Carolina, 미국, 27710
- Duke University
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Ohio
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Cincinnati, Ohio, 미국, 45229
- Cincinnati Children's Hospital
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Oklahoma
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Oklahoma City, Oklahoma, 미국, 73104
- University of Oklahoma Health Sciences
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Pennsylvania
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Philadelphia, Pennsylvania, 미국, 19104
- Children's Hospital of Philadelphia
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Philadelphia, Pennsylvania, 미국, 19107
- Thomas Jefferson University Hospital
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Philadelphia, Pennsylvania, 미국, 19134
- St. Christopher's Hospital for Children
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Tennessee
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Memphis, Tennessee, 미국, 38105
- Saint Jude Children's Hospital
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Texas
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Dallas, Texas, 미국, 75235
- Children's Medical Center of Dallas
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Dallas, Texas, 미국, 75235
- University of Texas Southwestern and Parkland
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Galveston, Texas, 미국, 77555
- University of Texas at Galveston
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참여기준
자격 기준
자격 기준
공부할 수 있는 나이
- 어린이
- 성인
- 고령자
건강한 자원 봉사자를 받아들입니다
연구 대상 성별
샘플링 방법
연구 인구
설명
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
공부 계획
연구는 어떻게 설계됩니까?
디자인 세부사항
공동 작업자 및 조사자
수사관
수사관
- 수석 연구원: Susi Lieff, PhD, Statistics and Data Management Center (SDMC) (RhoFed)
연구 기록 날짜
연구 주요 날짜
연구 시작
연구 시작
기본 완료 (실제)
기본 완료
연구 완료 (실제)
연구 완료
연구 등록 날짜
최초 제출
최초 제출
QC 기준을 충족하는 최초 제출
QC 기준을 충족하는 최초 제출
처음 게시됨 (추정)
처음 게시됨
연구 기록 업데이트
마지막 업데이트 게시됨 (추정)
마지막 업데이트 게시됨
QC 기준을 충족하는 마지막 업데이트 제출
QC 기준을 충족하는 마지막 업데이트 제출
마지막으로 확인됨
마지막으로 확인됨
추가 정보
이 연구와 관련된 용어
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