WhiMSICAL: A global Waldenström's Macroglobulinemia patient-derived data registry capturing treatment and quality of life outcomes

Ibrahim Tohidi-Esfahani; Andrew Warden; Elena Malunis; Peter L. DeNardis; Javier Haurat; Marita Black; Stephen Opat; Damien Kee; Shirley D'Sa; Marie José Kersten; Ruth L. Spearing; Maria Lia Palomba; Adam J. Olszewski; Carl Harrington; Clare L. Scott; Judith Trotman

doi:https://doi.org/10.1002/ajh.26173

WhiMSICAL: A global Waldenström's Macroglobulinemia patient-derived data registry capturing treatment and quality of life outcomes

Ibrahim Tohidi-Esfahani, Andrew Warden, Elena Malunis, Peter L. DeNardis, Javier Haurat, Marita Black, Stephen Opat, Damien Kee, Shirley D'Sa, Marie José Kersten, Ruth L. Spearing, Maria Lia Palomba, Adam J. Olszewski, Carl Harrington, Clare L. Scott, Judith Trotman

Clinical Haematology (AMC)

Research output: Contribution to journal › Comment/Letter to the editor › Academic

9 Citations (Scopus)

Original language	English
Pages (from-to)	E218-E222
Journal	American journal of hematology
Volume	96
Issue number	6
Early online date	2021
DOIs	https://doi.org/10.1002/ajh.26173
Publication status	Published - 1 Jun 2021

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Tohidi-Esfahani, I., Warden, A., Malunis, E., DeNardis, P. L., Haurat, J., Black, M., Opat, S., Kee, D., D'Sa, S., Kersten, M. J., Spearing, R. L., Palomba, M. L., Olszewski, A. J., Harrington, C., Scott, C. L., & Trotman, J. (2021). WhiMSICAL: A global Waldenström's Macroglobulinemia patient-derived data registry capturing treatment and quality of life outcomes. American journal of hematology, 96(6), E218-E222. https://doi.org/10.1002/ajh.26173

@article{b1906c59065d4198a503b62bb1f36f60,

title = "WhiMSICAL: A global Waldenstr{\"o}m's Macroglobulinemia patient-derived data registry capturing treatment and quality of life outcomes",

author = "Ibrahim Tohidi-Esfahani and Andrew Warden and Elena Malunis and DeNardis, {Peter L.} and Javier Haurat and Marita Black and Stephen Opat and Damien Kee and Shirley D'Sa and Kersten, {Marie Jos{\'e}} and Spearing, {Ruth L.} and Palomba, {Maria Lia} and Olszewski, {Adam J.} and Carl Harrington and Scott, {Clare L.} and Judith Trotman",

note = "Funding Information: I.T and J.T received indirect research funding (to BioGrid Australia) for the initial www.cart-wheel.org database WM‐specific amendment from Janssen‐Cilag. JT reports institutional funding for trials from Pharmacyclics, Beigene, Roche, BMS, Takeda, Janssen‐Cilag and Celgene. A.W reports personal fees (event photoshoot) from Janssen‐Cilag, outside the submitted work. S.O reports consultancy, honoraria, membership on advisory board and research funding from Roche, AbbVie, Janssen‐Cilag, Merck, and AstraZeneca; consultancy, membership on advisory board and research funding from BeiGene and Gilead; consultancy, honoraria, membership on advisory board from CSL Behring; research funding from Epizyme, all outside the submitted work. S.D reports honoraria and research funding from BeiGene and Janssen‐Cilag; honoraria from Sanofi, all outside the submitted work. M.K reports personal fees (travel grant and honoraria for advisory board) from Takeda, Roche (including for presentation), BMS, MSD, Janssen/Cilag, Amgen, Novartis (including for presentation), Kite/Gilead (including for presentation), Celgene and Miltenyi Biotech; research grants to institution from Takeda and Roche, all outside the submitted work. M.L.P received speaker fees from Pharmacyclics, outside the submitted work. A.J.O reports research grants to institution from Genentech/Roche, TG Therapeutics, Spectrum Pharmaceuticals and Adaptive Biotechnologies, all outside the submitted work. C.H reports stock ownership from AbbVie, BeiGene, Bristol‐Myers Squibb, Gilead, Idera Pharmaceuticals and Calithera Biosciences, outside the submitted work. C.L.S is a Director of BioGrid Australia, the umbrella organization hosting CART-WHEEL.org . E.M, P.L.D, J.H, M.B, and R.L.S declare no competing interests. Funding Information: The authors would like to thank and acknowledge all the data contributing patients. The strong recruitment to WhiMSICAL by patients across certain geographic regions reflects the recruitment support from many individual IWMF-affiliates globally, with particular acknowledgements to Ron Ternoway and Arlene Hinchcliffe of WM Foundation of Canada (WMFC), Lea Hullett of WM New Zealand (WM-NZ), Neil Motyer and several other members of WMozzies Australia, Hans Scheurer, President of Myeloma Patients Europe and previously board member of Hematon, Netherlands and Lindsey Bennister, chief executive of WMUK. The authors would also like to express gratitude for the generous funding support from The Foundation for A Bloody Great Cause, Concord, NSW 2139 Australia, and several members of WMozzies Australia. Funding Information: The authors would like to thank and acknowledge all the data contributing patients. The strong recruitment to WhiMSICAL by patients across certain geographic regions reflects the recruitment support from many individual IWMF‐affiliates globally, with particular acknowledgements to Ron Ternoway and Arlene Hinchcliffe of WM Foundation of Canada (WMFC), Lea Hullett of WM New Zealand (WM‐NZ), Neil Motyer and several other members of WMozzies Australia, Hans Scheurer, President of Myeloma Patients Europe and previously board member of Hematon, Netherlands and Lindsey Bennister, chief executive of WMUK. The authors would also like to express gratitude for the generous funding support from The Foundation for A Bloody Great Cause, Concord, NSW 2139 Australia, and several members of WMozzies Australia. Copyright: Copyright 2021 Elsevier B.V., All rights reserved.",

year = "2021",

month = jun,

day = "1",

doi = "https://doi.org/10.1002/ajh.26173",

language = "English",

volume = "96",

pages = "E218--E222",

journal = "American journal of hematology",

issn = "0361-8609",

publisher = "Wiley-Liss Inc.",

number = "6",

}

Tohidi-Esfahani, I, Warden, A, Malunis, E, DeNardis, PL, Haurat, J, Black, M, Opat, S, Kee, D, D'Sa, S, Kersten, MJ, Spearing, RL, Palomba, ML, Olszewski, AJ, Harrington, C, Scott, CL & Trotman, J 2021, 'WhiMSICAL: A global Waldenström's Macroglobulinemia patient-derived data registry capturing treatment and quality of life outcomes', American journal of hematology, vol. 96, no. 6, pp. E218-E222. https://doi.org/10.1002/ajh.26173

TY - JOUR

T1 - WhiMSICAL: A global Waldenström's Macroglobulinemia patient-derived data registry capturing treatment and quality of life outcomes

AU - Tohidi-Esfahani, Ibrahim

AU - Warden, Andrew

AU - Malunis, Elena

AU - DeNardis, Peter L.

AU - Haurat, Javier

AU - Black, Marita

AU - Opat, Stephen

AU - Kee, Damien

AU - D'Sa, Shirley

AU - Kersten, Marie José

AU - Spearing, Ruth L.

AU - Palomba, Maria Lia

AU - Olszewski, Adam J.

AU - Harrington, Carl

AU - Scott, Clare L.

AU - Trotman, Judith

N1 - Funding Information: I.T and J.T received indirect research funding (to BioGrid Australia) for the initial www.cart-wheel.org database WM‐specific amendment from Janssen‐Cilag. JT reports institutional funding for trials from Pharmacyclics, Beigene, Roche, BMS, Takeda, Janssen‐Cilag and Celgene. A.W reports personal fees (event photoshoot) from Janssen‐Cilag, outside the submitted work. S.O reports consultancy, honoraria, membership on advisory board and research funding from Roche, AbbVie, Janssen‐Cilag, Merck, and AstraZeneca; consultancy, membership on advisory board and research funding from BeiGene and Gilead; consultancy, honoraria, membership on advisory board from CSL Behring; research funding from Epizyme, all outside the submitted work. S.D reports honoraria and research funding from BeiGene and Janssen‐Cilag; honoraria from Sanofi, all outside the submitted work. M.K reports personal fees (travel grant and honoraria for advisory board) from Takeda, Roche (including for presentation), BMS, MSD, Janssen/Cilag, Amgen, Novartis (including for presentation), Kite/Gilead (including for presentation), Celgene and Miltenyi Biotech; research grants to institution from Takeda and Roche, all outside the submitted work. M.L.P received speaker fees from Pharmacyclics, outside the submitted work. A.J.O reports research grants to institution from Genentech/Roche, TG Therapeutics, Spectrum Pharmaceuticals and Adaptive Biotechnologies, all outside the submitted work. C.H reports stock ownership from AbbVie, BeiGene, Bristol‐Myers Squibb, Gilead, Idera Pharmaceuticals and Calithera Biosciences, outside the submitted work. C.L.S is a Director of BioGrid Australia, the umbrella organization hosting CART-WHEEL.org . E.M, P.L.D, J.H, M.B, and R.L.S declare no competing interests. Funding Information: The authors would like to thank and acknowledge all the data contributing patients. The strong recruitment to WhiMSICAL by patients across certain geographic regions reflects the recruitment support from many individual IWMF-affiliates globally, with particular acknowledgements to Ron Ternoway and Arlene Hinchcliffe of WM Foundation of Canada (WMFC), Lea Hullett of WM New Zealand (WM-NZ), Neil Motyer and several other members of WMozzies Australia, Hans Scheurer, President of Myeloma Patients Europe and previously board member of Hematon, Netherlands and Lindsey Bennister, chief executive of WMUK. The authors would also like to express gratitude for the generous funding support from The Foundation for A Bloody Great Cause, Concord, NSW 2139 Australia, and several members of WMozzies Australia. Funding Information: The authors would like to thank and acknowledge all the data contributing patients. The strong recruitment to WhiMSICAL by patients across certain geographic regions reflects the recruitment support from many individual IWMF‐affiliates globally, with particular acknowledgements to Ron Ternoway and Arlene Hinchcliffe of WM Foundation of Canada (WMFC), Lea Hullett of WM New Zealand (WM‐NZ), Neil Motyer and several other members of WMozzies Australia, Hans Scheurer, President of Myeloma Patients Europe and previously board member of Hematon, Netherlands and Lindsey Bennister, chief executive of WMUK. The authors would also like to express gratitude for the generous funding support from The Foundation for A Bloody Great Cause, Concord, NSW 2139 Australia, and several members of WMozzies Australia. Copyright: Copyright 2021 Elsevier B.V., All rights reserved.

PY - 2021/6/1

Y1 - 2021/6/1

UR - http://www.scopus.com/inward/record.url?scp=85104049014&partnerID=8YFLogxK

U2 - https://doi.org/10.1002/ajh.26173

DO - https://doi.org/10.1002/ajh.26173

M3 - Comment/Letter to the editor

C2 - 33755232

SN - 0361-8609

VL - 96

SP - E218-E222

JO - American journal of hematology

JF - American journal of hematology

IS - 6

ER -

WhiMSICAL: A global Waldenström's Macroglobulinemia patient-derived data registry capturing treatment and quality of life outcomes

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