Development of a distributed international patient data registry for hairy cell leukemia

Andritsos, LA; Anghelina, M; Neal, J; Blachly, JS; Mathur, P; Lele, O; Dearden, C; Iyengar, S; Cross, M; Zent, CS; Rogers, KA; Epperla, N; Lozanski, G; Oakes, CC; Kraut, E; Ruppert, AS; Zhao, Q; Bhat, SA; Forconi, F; Banerji, V; Handunnetti, S; Tam, CS; Seymour, JF; Else, M; Kreitman, RJ; Saven, A; Call, T; Parikh, SA; Ravandi, F; Johnston, JB; Tiacci, E; Troussard, X; Tallman, MS; Dietrich, S; Tadmor, T; Gozzetti, A; Zinzani, PL; Robak, T; Quest, G; Demeter, J; Rai, K; Fernandez, SA; Grever, M

Author(s): Andritsos, LA; Anghelina, M; Neal, J; Blachly, JS; Mathur, P; Lele, O; Dearden, C; Iyengar, S; Cross, M; Zent, CS; Rogers, KA; Epperla, N; Lozanski, G; Oakes, CC; Kraut, E; Ruppert, AS; Zhao, Q; Bhat, SA; Forconi, F; Banerji, V; Handunnetti, S; Tam, CS; Seymour, JF; Else, M; Kreitman, RJ; Saven, A; Call, T; Parikh, SA; Ravandi, F; Johnston, JB; Tiacci, E; Troussard, X; Tallman, MS; Dietrich, S; Tadmor, T; Gozzetti, A; Zinzani, PL; Robak, T; Quest, G; Demeter, J; Rai, K; Fernandez, SA; Grever, M;
Details: Publication Year 2022-12,Volume 63,Issue #13,Page 3021-3031
Journal Title: Leukemia & Lymphoma
Publication Type: Review
Abstract: 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.
Keywords: Humans; *Leukemia, Hairy Cell/diagnosis/epidemiology/therapy; Treatment Outcome; Registries; Hcl; outcomes; registry
Department(s): Clinical Haematology
PubMed ID: 36070610
Publisher's Version: https://doi.org/10.1080/10428194.2022.2109157
Open Access at Publisher's Site: https://doi.org/10.1080/10428194.2022.2109157
Terms of Use/Rights Notice: Refer to copyright notice on published article.

Creation Date: 2024-09-26 05:45:08

Last Modified: 2024-09-26 05:48:04