Born in the UK: A registry to improve and broadcast knowledge on Waldenström macroglobulinaemia.

IgM-related disorder Waldenström macroglobulinaemia real-world data registry

Journal

British journal of haematology
ISSN: 1365-2141
Titre abrégé: Br J Haematol
Pays: England
ID NLM: 0372544

Informations de publication

Date de publication:
06 2023
Historique:
received: 01 02 2023
accepted: 01 02 2023
medline: 23 5 2023
pubmed: 17 2 2023
entrez: 16 2 2023
Statut: ppublish

Résumé

Registries constitute an interesting source of real-world data and bring complementary information to randomised controlled trials. They are of particular importance in rare diseases such as Waldenström macroglobulinaemia (WM), which can present with various clinical and biological features. In their paper Uppal and colleagues describe the development of the Rory Morrison Registry, the UK registry for WM and IgM-related disorders and highlight the profound changes in therapies both at first-line and relapsed settings in the recent years. Commentary on: Uppal E. et al. The WMUK Rory Morrison Registry for Waldenström Macroglobulinaemia: the growth of a national registry for a rare disorder. Br J Haematol. 2023;201:905-912.

Identifiants

pubmed: 36794868
doi: 10.1111/bjh.18695
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

809-810

Informations de copyright

© 2023 The Authors. British Journal of Haematology published by British Society for Haematology and John Wiley & Sons Ltd.

Références

Uppal E, Khwaja J, Bomsztyk J, McCarthy H, Kothari J, Walton P, et al. The WMUK Rory Morrison Registry for Waldenström Macroglobulinaemia: the growth of a national registry for a rare disorder. Br J Haematol. 2023;201:905-912.
Varettoni M, Ferrari A, Frustaci AM, Ferretti VV, Rizzi R, Motta M, et al. Younger patients with Waldenström Macroglobulinemia exhibit low risk profile and excellent outcomes in the era of immunotherapy and targeted therapies. Am J Hematol. 2020;95(12):1473-8.
Chohan KL, Paludo J, Vallumsetla N, Larson D, King RL, He R, et al. Survival trends in young patients with Waldenström macroglobulinemia: over five decades of experience. Am J Hematol. 2023. https://doi.org/10.1002/ajh.26807 Epub ahead of print.
Tohidi-Esfahani I, Warden A, Malunis E, DeNardis PL, Haurat J, Black M, et al. WhiMSICAL: a global Waldenström's Macroglobulinemia patient-derived data registry capturing treatment and quality of life outcomes. Am J Hematol. 2021;96(6):E218-22.
Khwaja J, Uppal E, Bristogiannis S, McCarthy H, Kothari J, Rismani A, et al. Patient reported outcome measures in Waldenström macroglobulinaemia: a real-world data analysis from the WMUK Rory Morrison registry. EJHaem. 2022; accepted.
Abeykoon JP, Kumar S, Castillo JJ, D'Sa S, Kastritis E, Durot E, et al. Bendamustine rituximab (BR) versus ibrutinib (Ibr) as primary therapy for Waldenström macroglobulinemia (WM): an international collaborative study. J Clin Oncol. 2022;40(16_suppl):7566-6.
Bachy E, Le Gouill S, Di Blasi R, Sesques P, Manson G, Cartron G, et al. A real-world comparison of tisagenlecleucel and axicabtagene ciloleucel CAR T cells in relapsed or refractory diffuse large B cell lymphoma. Nat Med. 2022;28(10):2145-54.
Murthy VH, Krumholz HM, Gross CP. Participation in cancer clinical trials: race-, sex-, and age-based disparities. JAMA. 2004;291(22):2720-6.
Le Lan C, Belot A, Golfier C, Audin B, Sesques P, Bernier A, et al. Evaluation of participation and recruitment bias in a prospective real-life multicentric cohort « real world data in lymphoma and survival in adults » (REALYSA study) for newly diagnosed lymphoma patients over one year in a hematology Department of Teaching Hospital. Blood. 2022;140(Supplement 1):5210-1.
Khwaja J, Uppal E, Baker R, Trivedi K, Rismani A, Gupta R, et al. Bortezomib-based therapy is effective and well tolerated in frontline and multiply pre-treated Waldenström macroglobulinaemia including BTKi failures: a real-world analysis. EJHaem. 2022;3(4):1330-4. https://doi.org/10.1002/jha2.597

Auteurs

Eric Durot (E)

Department of Hematology, University Hospital of Reims and UFR Médecine, Reims, France.

Alain Delmer (A)

Department of Hematology, University Hospital of Reims and UFR Médecine, Reims, France.

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