A Data Resource for Blood and Marrow Transplants and Adoptive Cellular Therapy Research

项目总结/摘要 国际血液和骨髓移植研究中心（CIBMTR）是一个临床研究项目， 致力于解决造血细胞移植（HCT）和造血干细胞移植领域的重要问题。 细胞疗法（ACT）。CIBMTR维护了一个大型结局登记处，其中包含> 625，000 HCT/ACT的信息 美国和国际治疗中心的患者，并提供统计支持， 科学专家来分析这些数据。一个单独资助的生物标本研究库， 这些临床数据可用于大部分HCT接受者。CIBMTR最近开始收集病人- 报告的结果（PRO），直接从患者那里收集的信息，以了解他们的经验， 治疗及其对生活质量的影响，并将这些数据与临床结果联系起来。CIBMTR致力于 支持研究，为癌症和非恶性血液病患者的临床实践提供信息。使用 世界各地数千名调查人员在当前和以前的供资周期内对登记册进行的调查 为1，700多份关于重要问题的出版物提供了资料。这些知识已经传播到多个 利益相关者加速我们领域的创新，并改善我们患者的结果。CIBMTR将 继续在NIH提供的支持下建立基础设施，在此应用中， 建议通过以下具体目标加强该登记册并提高其效用： 资源开发：通过以下方式维持和加强登记册的范围和广泛可用性： 添加新的指示（例如，实体瘤，感染）和数据类型（例如，PRO）和优化数据 生命周期 资源利用：支持恶性和非恶性血液病的新研究 疾病和实体瘤，及时通过观察性研究;相关研究（例如， 支持其他数据倡议（特别是联邦资助的）和临床试验网络; 建立合作关系。

PROJECT SUMMARY/ABSTRACT The Center for International Blood and Marrow Transplant Research (CIBMTR) is a clinical research program dedicated to addressing important issues in the field of Hematopoietic Cell Transplantation (HCT) and Adoptive Cell Therapy (ACT). CIBMTR maintains a large outcomes registry with information for >625,000 HCT/ACT patients in treatment centers in the United States and internationally and provides statistical support and scientific expertise for analyzing those data. A separately funded research repository of biospecimens linked to these clinical data is available for a large subset of HCT recipients. CIBMTR recently began collecting patient- reported outcomes (PROs), information collected directly from the patient to understand their experience of the therapy and its impact on their quality of life and links these data to clinical outcomes. CIBMTR is dedicated to supporting research to inform clinical practice for patients with cancer and non-malignant blood disorders. Use of the registry by thousands of investigators around the world during the current and previous funding cycles has contributed to >1,700 publications on important issues. This knowledge has been disseminated to multiple stakeholders to speed innovation across our field and improve outcomes for our patients. CIBMTR will continue to build on the infrastructure made possible by the support provided by the NIH, and in this application proposes to enhance this registry and to advance its utility through the following specific aims: Resource Development: To maintain and enhance the scope and broad usability of the registry by adding new indications (e.g., solid tumors, infection) and data types (e.g., PROs) and optimizing the data lifecycle. Resource Utilization: To support novel research in hematological malignant and non-malignant disorders and solid tumors, in a timely manner through observational research; correlative studies (e.g., biospecimens, PRO); supporting other data initiatives (especially federally funded) and clinical trial networks; and building collaborative relationships.