New Investigation Initiatives for the Prevention of Complications of Thalassemia

预防地中海贫血并发症的新研究举措

基本信息

  • 批准号:
    8129682
  • 负责人:
  • 金额:
    $ 15万
  • 依托单位:
  • 依托单位国家:
    美国
  • 项目类别:
  • 财政年份:
    2007
  • 资助国家:
    美国
  • 起止时间:
    2007-09-30 至 2012-09-29
  • 项目状态:
    已结题

项目摘要

This is a new application for a comprehensive Thalassemia care center, at Children's Hospital Boston (CHB), with off-site collaboration with the Thalassemia program of Children's Hospital of Atlanta. Both organizations have been participants as subcontractors in the first five year period of the CDC-led Thalassemia project. The objectives of this proposal are to provide assessment for, and prevention and management of complications of Thalassemia. The target populations include individuals in New England and in the Atlanta region, with transfusion-dependent beta Thalassemia (Thal), alpha Thal (homozygous and hemoglobin H disease), Thal intermedia, and related disorders. The burden of disease in Thal is high. No other single group of humans receives as many fresh red cell transfusions in a lifetime as patients with transfusion-dependent Thal (essentially monthly transfusion for life). Therefore, screening for blood borne diseases is a crucial part of management. In addition, with transfusions comes obligatory iron overload, and iron-related heart disease, liver disease, and endocrinopathies are major causes of morbidity and mortality in this patient group. Good compliance with oral iron chelators is highly correlated with improved survival, but even apparently well-chelated patients, plus non-transfused Thal intermedia patients, can develop over decades, life-threatening iron-related complications including heart failure, arrhythmia, cirrhosis, diabetes, as well as infertility and other reproductive endocrine disorders. Faced with these challenges, the keys to management, surveillance and prevention of complications include regular comprehensive visits at expert centers with specialists and tests skilled in Thal care, ongoing blood safety surveillance and tests for iron and its sequelae, as well as community outreach, collaboration with patient support groups, family and patient education, and continuing psychosocial assessment and support. The Thalassemia program at CHB has been active for more than 40 years, and has led many of the developments in the field, particularly in chelation therapy. The specific aims of this project are: (I) to provide comprehensive care in Thal, screen for potential complications, and implement strategies to prevent complications; (II) to initiate a patient/family education program modeled on the Do the Five strategy used by hemophilia centers and CDC to promote comprehensive care, vaccines for blood-borne viruses, adequate chelation, and blood safety monitoring. (III) To establish research collaboration with the NIH-sponsored Thalassemia Clinical Research Network (to which CHB and CHOA belong; and principal investigator Dr. Neufeld is chair of the TCRN steering committee.) Each aim contains a research component for assessment of clinical outcomes, aimed at generating hypothesis for further research, and providing opportunities to improve care and reduce complications. Narrative: The purpose of this project is to improve care and long-term health outcomes in patients with Thalassemia (Cooley's Anemia). This is a new application to join an ongoing cooperative endeavor of several large US Thalassemia programs, with Children's Hospital, Boston as the primary site, and Emory/Children's Healthcare of Atlanta as a collaborating site. The goals will be achieved by providing comprehensive medical services to patients with transfusion-dependent Thalassemia, and screening patients for blood-borne infections and for complications of the disorder, which are related to transfusional iron overload and to treatment of iron problems. We propose a nationwide educational strategy analogous to the efforts launched in the hemophilia community, with CDC support, for comprehensive care. We propose to pilot a new database under development at Children's Memorial Hospital in Chicago, to improve data abstraction from the electronic medical records. Finally, we propose formal collaboration with the Thalassemia clinical research network of the National Heart, Blood, and Lung Institute, to leverage the ongoing longitudinal screening in both networks.
这是一个在波士顿儿童医院的综合性地中海贫血护理中心的新应用

项目成果

期刊论文数量(1)
专著数量(0)
科研奖励数量(0)
会议论文数量(0)
专利数量(0)
Human T cell lymphotropic virus type 1 infection among U.S. thalassemia patients.
美国地中海贫血患者中人类 T 细胞淋巴细胞病毒 1 型感染。
  • DOI:
    10.1089/aid.2012.0382
  • 发表时间:
    2013
  • 期刊:
  • 影响因子:
    1.5
  • 作者:
    Switzer,WilliamM;Shankar,Anupama;Trimble,SeanR;Thompson,AlexisA;Giardina,PatriciaJ;Cohen,AlanR;Coates,ThomasD;Vichinsky,Elliott;Neufeld,EllisJ;Boudreaux,JeanneM;Heneine,Walid
  • 通讯作者:
    Heneine,Walid
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{{ truncateString('ELLIS J NEUFELD', 18)}}的其他基金

Tenth Cooley's Anemia Symposium: Basic Science, Clinical Research, and Patient Healthcare for Thalassemia Syndromes.
第十届库利贫血研讨会:地中海贫血综合征的基础科学、临床研究和患者保健。
  • 批准号:
    8986370
  • 财政年份:
    2015
  • 资助金额:
    $ 15万
  • 项目类别:
UNIVERSAL DATA AND SERUM SPECIMEN COLLECTION SYSTEM FOR HEMOPHILIA
血友病通用数据和血清样本采集系统
  • 批准号:
    7607273
  • 财政年份:
    2007
  • 资助金额:
    $ 15万
  • 项目类别:
New Investigation Initiatives for the Prevention of Complications of Thalassemia
预防地中海贫血并发症的新研究举措
  • 批准号:
    7901156
  • 财政年份:
    2007
  • 资助金额:
    $ 15万
  • 项目类别:
New Investigation Initiatives for the Prevention of Complications of Thalassemia
预防地中海贫血并发症的新研究举措
  • 批准号:
    7682878
  • 财政年份:
    2007
  • 资助金额:
    $ 15万
  • 项目类别:
New Investigation Initiatives for the Prevention of Complications of Thalassemia
预防地中海贫血并发症的新研究举措
  • 批准号:
    7427229
  • 财政年份:
    2007
  • 资助金额:
    $ 15万
  • 项目类别:
New Investigation Initiatives for the Prevention of Complications of Thalassemia
预防地中海贫血并发症的新研究举措
  • 批准号:
    7492148
  • 财政年份:
    2007
  • 资助金额:
    $ 15万
  • 项目类别:
THALASSEMIA CLINICAL RESEARCH NETWORK REGISTRY
地中海贫血临床研究网络注册中心
  • 批准号:
    7607256
  • 财政年份:
    2007
  • 资助金额:
    $ 15万
  • 项目类别:
THALASSEMIA DATA AND BLOOD SPECIMEN COLLECTION SYSTEM
地中海贫血数据和血液样本采集系统
  • 批准号:
    7607252
  • 财政年份:
    2007
  • 资助金额:
    $ 15万
  • 项目类别:
Clinical Hematology Research Career Development Program (K12)
临床血液学研究职业发展计划(K12)
  • 批准号:
    7487964
  • 财政年份:
    2006
  • 资助金额:
    $ 15万
  • 项目类别:
THALASSEMIA DATA AND BLOOD SPECIMEN COLLECTION SYSTEM
地中海贫血数据和血液样本采集系统
  • 批准号:
    7380732
  • 财政年份:
    2006
  • 资助金额:
    $ 15万
  • 项目类别:

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标准:通过有效的透明度倡议促进 STEM 道德:跨学科调查
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New Investigation Initiatives for the Prevention of Complications of Thalassemia
预防地中海贫血并发症的新研究举措
  • 批准号:
    7427478
  • 财政年份:
    2007
  • 资助金额:
    $ 15万
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New Investigation Initiatives for the Prevention of Complications of Thalassemia
预防地中海贫血并发症的新研究举措
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New Investigation Initiatives for the Prevention of Complications of Thalassemia
预防地中海贫血并发症的新研究举措
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    7901156
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    2007
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预防地中海贫血并发症的新研究举措
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    7682878
  • 财政年份:
    2007
  • 资助金额:
    $ 15万
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New Investigation Initiatives for the Prevention of Complications of Thalassemia
预防地中海贫血并发症的新研究举措
  • 批准号:
    7492300
  • 财政年份:
    2007
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    $ 15万
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预防地中海贫血并发症的新研究举措
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预防地中海贫血并发症的新研究举措
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    7492148
  • 财政年份:
    2007
  • 资助金额:
    $ 15万
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New Investigation Initiatives for the Prevention of Complications of Thalassemia
预防地中海贫血并发症的新研究举措
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  • 财政年份:
    2007
  • 资助金额:
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