Division of Hematology Oncology, University of New Mexico Comprehensive Cancer Center, Albuquerque, NM, USA.
Department of Biomedical Informatics, The Ohio State University, Columbus, OH, USA.
Leuk Lymphoma. 2022 Dec;63(13):3021-3031. doi: 10.1080/10428194.2022.2109157. Epub 2022 Sep 7.
Hairy cell leukemia (HCL) is a rare lymphoproliferative disorder, comprising only 2% of all leukemias. The Hairy Cell Leukemia Foundation (HCLF) has developed a patient data registry to enable investigators to better study the clinical features, treatment outcomes, and complications of patients with HCL. This system utilizes a centralized registry architecture. Patients are enrolled at HCL Centers of Excellence (COE) or via a web-based portal. All data are de-identified, which reduces regulatory burden and increases opportunities for data access and re-use. To date, 579 patients have been enrolled in the registry. Efforts are underway to engage additional COE's to expand access to patients across the globe. This international PDR will enable researchers to study outcomes in HCL in ways not previously possible due to the rarity of the disease and will serve as a platform for future prospective research.
毛细胞白血病（HCL）是一种罕见的淋巴增殖性疾病，仅占所有白血病的 2%。毛细胞白血病基金会（HCLF）已经开发了一个患者数据登记系统，使研究人员能够更好地研究 HCL 患者的临床特征、治疗结果和并发症。该系统利用集中式登记架构。患者在 HCL 卓越中心（COE）或通过基于网络的门户注册。所有数据都经过去识别处理，这减轻了监管负担，增加了数据访问和再利用的机会。迄今为止，已有 579 名患者在该登记处注册。正在努力吸引更多的 COE 参与，以扩大全球范围内患者的参与机会。这个国际性的 PDR 将使研究人员能够以前所未有的方式研究 HCL 的结果，因为这种疾病非常罕见，并且将成为未来前瞻性研究的平台。
