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

Leslie A. Andritsos; Mirela Anghelina; Jasmine Neal; James S. Blachly; Puneet Mathur; Omkar Lele; Claire Dearden; Sunil Iyengar; Matthew Cross; Clive S. Zent; Kerry A. Rogers; Narendranath Epperla; Gerard Lozanski; Christopher C. Oakes; Eric Kraut; Amy S. Ruppert; Qiuhong Zhao; Seema A. Bhat; Francesco Forconi; Versha Banerji; Sasanka Handunnetti; Constantine S. Tam; John F. Seymour; Monica Else; Robert J. Kreitman; Alan Saven; Timothy Call; Sameer A. Parikh; Farhad Ravandi; James B. Johnston; Enrico Tiacci; Xavier Troussard; Martin S. Tallman; Sascha Dietrich; Tamar Tadmor; Alessandro Gozzetti; Pier Luigi Zinzani; Tadeusz Robak; Graeme Quest; Judit Demeter; Kanti Rai; Soledad A. Fernandez; Michael Grever

doi:10.1080/10428194.2022.2109157

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

Leslie A. Andritsos, Mirela Anghelina, Jasmine Neal, James S. Blachly, Puneet Mathur, Omkar Lele, Claire Dearden, Sunil Iyengar, Matthew Cross, Clive S. Zent, Kerry A. Rogers, Narendranath Epperla, Gerard Lozanski, Christopher C. Oakes, Eric Kraut, Amy S. Ruppert, Qiuhong Zhao, Seema A. Bhat, Francesco Forconi, Versha BanerjiSasanka Handunnetti, Constantine S. Tam, John F. Seymour, Monica Else, Robert J. Kreitman, Alan Saven, Timothy Call, Sameer A. Parikh, Farhad Ravandi, James B. Johnston, Enrico Tiacci, Xavier Troussard, Martin S. Tallman, Sascha Dietrich, Tamar Tadmor, Alessandro Gozzetti, Pier Luigi Zinzani, Tadeusz Robak, Graeme Quest, Judit Demeter, Kanti Rai, Soledad A. Fernandez, Michael Grever

Hematology

Research output: Contribution to journal › Review article › peer-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.

Original language	English (US)
Pages (from-to)	3021-3031
Number of pages	11
Journal	Leukemia and Lymphoma
Volume	63
Issue number	13
DOIs	https://doi.org/10.1080/10428194.2022.2109157
State	Published - 2022

Keywords

HCL
outcomes
registry

ASJC Scopus subject areas

Hematology
Oncology
Cancer Research

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10.1080/10428194.2022.2109157

Cite this

Andritsos, L. A., Anghelina, M., Neal, J., Blachly, J. S., Mathur, P., Lele, O., Dearden, C., Iyengar, S., Cross, M., Zent, C. S., Rogers, K. A., Epperla, N., Lozanski, G., Oakes, C. C., Kraut, E., Ruppert, A. S., Zhao, Q., Bhat, S. A., Forconi, F., ... Grever, M. (2022). Development of a distributed international patient data registry for hairy cell leukemia. Leukemia and Lymphoma, 63(13), 3021-3031. https://doi.org/10.1080/10428194.2022.2109157

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 2022, 'Development of a distributed international patient data registry for hairy cell leukemia', Leukemia and Lymphoma, vol. 63, no. 13, pp. 3021-3031. https://doi.org/10.1080/10428194.2022.2109157

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title = "Development of a distributed international patient data registry for hairy cell leukemia",

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{\textquoteright}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.",

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author = "Andritsos, {Leslie A.} and Mirela Anghelina and Jasmine Neal and Blachly, {James S.} and Puneet Mathur and Omkar Lele and Claire Dearden and Sunil Iyengar and Matthew Cross and Zent, {Clive S.} and Rogers, {Kerry A.} and Narendranath Epperla and Gerard Lozanski and Oakes, {Christopher C.} and Eric Kraut and Ruppert, {Amy S.} and Qiuhong Zhao and Bhat, {Seema A.} and Francesco Forconi and Versha Banerji and Sasanka Handunnetti and Tam, {Constantine S.} and Seymour, {John F.} and Monica Else and Kreitman, {Robert J.} and Alan Saven and Timothy Call and Parikh, {Sameer A.} and Farhad Ravandi and Johnston, {James B.} and Enrico Tiacci and Xavier Troussard and Tallman, {Martin S.} and Sascha Dietrich and Tamar Tadmor and Alessandro Gozzetti and Zinzani, {Pier Luigi} and Tadeusz Robak and Graeme Quest and Judit Demeter and Kanti Rai and Fernandez, {Soledad A.} and Michael Grever",

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year = "2022",

doi = "10.1080/10428194.2022.2109157",

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AU - Andritsos, Leslie A.

AU - Anghelina, Mirela

AU - Neal, Jasmine

AU - Blachly, James S.

AU - Mathur, Puneet

AU - Lele, Omkar

AU - Dearden, Claire

AU - Iyengar, Sunil

AU - Cross, Matthew

AU - Zent, Clive S.

AU - Rogers, Kerry A.

AU - Epperla, Narendranath

AU - Lozanski, Gerard

AU - Oakes, Christopher C.

AU - Kraut, Eric

AU - Ruppert, Amy S.

AU - Zhao, Qiuhong

AU - Bhat, Seema A.

AU - Forconi, Francesco

AU - Banerji, Versha

AU - Handunnetti, Sasanka

AU - Tam, Constantine S.

AU - Seymour, John F.

AU - Else, Monica

AU - Kreitman, Robert J.

AU - Saven, Alan

AU - Call, Timothy

AU - Parikh, Sameer A.

AU - Ravandi, Farhad

AU - Johnston, James B.

AU - Tiacci, Enrico

AU - Troussard, Xavier

AU - Tallman, Martin S.

AU - Dietrich, Sascha

AU - Tadmor, Tamar

AU - Gozzetti, Alessandro

AU - Zinzani, Pier Luigi

AU - Robak, Tadeusz

AU - Quest, Graeme

AU - Demeter, Judit

AU - Rai, Kanti

AU - Fernandez, Soledad A.

AU - Grever, Michael

PY - 2022

Y1 - 2022

N2 - 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.

AB - 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.

KW - HCL

KW - outcomes

KW - registry

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DO - 10.1080/10428194.2022.2109157

M3 - Review article

C2 - 36070610

AN - SCOPUS:85137771499

SN - 1042-8194

VL - 63

SP - 3021

EP - 3031

JO - Leukemia and Lymphoma

JF - Leukemia and Lymphoma

IS - 13

ER -

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

Abstract

Keywords

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