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Lymphoma Coalition Research

Lymphoma Coalition has used the results from the Global Patient Survey on Lymphomas and CLL (GPS) to conduct and publish its own research on the patient experience.


It is imperative the issues raised globally by patients through the biennial survey are conveyed to the medical and research communities to improve care moving forward.


Research from the 2020 GPS


A Comparative Study of Healthcare Decision-Making in Patients with DLBCL: CAR-T vs non-CAR-T

the 4th European CAR T-cell Meeting, jointly organized by the European Hematology Association and the EBMT, holding Feb 10-12, 2022

Lymphoma Coalition provides insight into the healthcare decision-making experience of patients with diffuse large B-cell lymphoma (DLBCL) who have been treated with CAR-T therapy in comparison to those who have not been treated with CAR-T therapy, using the Lymphoma Coalition (LC) 2020 Global Patient Survey (GPS) on Lymphomas and CLL. The results show that CAR-T patients would like to be more involved in the decision-making process of their healthcare, but few patients are having the conversations with their doctors needed to achieve this goal.

Lymphoma Coalition advocates for better engagement of patients with their CAR-T providers, to ensure that stronger patient-centred healthcare is provided.


Presented at the 63rd American Society of Hematology (ASH) conference on11 December

A comparative analysis of patient experience and patient-doctor communication in patients with lymphoma and CLL: Clinical trials versus non-Clinical trials

Presented at the 63d American Society of Hematology (ASH) conference on12 December


A Cross-Sectional Study Examining the Diagnosis and Psychosocial Experiences of Patients with Cutaneous Lymphomas

Presented at the European Organisation For Research and Treatment of Cancer (EORTC) conference 15 October 2021.

In collaboration with the Cutaneous Lymphoma Foundation (CLF)

A cross-sectional study examining how knowledge of genetic and biomarkers affect the information and communication experiences of patients with CLL.

Presented at the International Workshop on Chronic Lymphocytic Leukaemia (iwCLL) 2021: Sept 17-20, 2021


Barriers to treatment for patients with lymphoma across Europe: Upper middle income versus high income countries

Presented at the European Society for Medical Oncology (ESMO) Congress 2021: Sep 16-21 2021

Abstract 844P Download the poster


A cross-sectional study on the global differences in information experiences and needs of patients with lymphoma and CLL. Hematological Oncology

Presented at the 16th International Conference on Malignant Lymphoma, Virtual Edition, 18-22 June 2021

39(S2), abstr 140. DOI: 10.1002/hon.52_2880

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A cross-sectional study examining the impact of ageing on the psychosocial experiences of patients with lymphoma

Presented at European Hematology Association Annual Congress EHA 2021 Virtual, 9-17 June 2021

EHA Library or DOI: 10.13140/RG.2.2.12691.60966.

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A cross-sectional study on global disparities in information experiences of patients with lymphoma/CLL.

Presented at the 57th American Society of Clinical Oncology (ASCO) 2021 Annual Meeting, 4-8 June 2021

“This study uses the Lymphoma Coalition (LC) 2020 Global Patient Survey (GPS) on Lymphomas and CLL to describe the global differences in the top choices for medical information among patients with lymphoma, as well as differences in their understanding of this information relating to various aspects of their care”


Journal of Clinical Oncology, 39 (Suppl 15; abstr e18517). DOI: 10.1200/JCO.2021.39.15_suppl.e18517

A cross-sectional study examining the diagnosis and psychosocial experiences of patients with cutaneous lymphomas.

Presented at the International Society of Cutaneous Lymphoma (ISCL) Scientific Meeting & Annual General Meeting, 1 May 2021

DOI: 10.13140/RG.2.2.27371.67364

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A cross-sectional study of the psychosocial issues experienced by patients with lymphoma treated with stem cell transplant.

Presented at the European Bone Marrow and Transplant Group (EBMT) 47th Annual Meeting 14-17 March 2021

 DOI: 10.13140/RG.2.2.16047.05283

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A cross-sectional study of the side-effects profile and patient-doctor communication about side effects in patients with lymphoma treated with CAR-T therapy

Presented at the EHA-EBMT 3rd European CAR T-Cell Meeting, 4-6 February 2021 DOI:10.13140/RG.2.2.30727.11681

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Comparative study of information needs and support experiences of patients with lymphoma: CAR T vs non-CAR T

Presented at the EHA-EBMT 3rd European CAR T-Cell Meeting, 4-6 February 2021 DOI: 10.13140/RG.2.2.10594.45765

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A cross-sectional study examining the relationship between patient information level and patient participation in healthcare decisions and health management

Blood, 136 (Suppl 1). DOI: 10.1182/blood-2020-135837

Presented at the 62nd American Society of Hematology (ASH) Annual Meeting & Exposition, 5-8 December 2020

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Research from the 2018 GPS


A cross-sectional study of unmet needs of lymphoma patients in patient-doctor communication.

Presented at the European Hematology Association Annual Congress EHA 2020 Virtual, 11 June-15 October 2020 Blood, 136 (Suppl 1). DOI: 10.1182/blood-2020-135837

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Journal of Clinical Oncology, 38 (Suppl; abstr e20071). DOI: 10.1200/JCO.2020.38.15_suppl.e20071

Presented at the 56th American Society of Clinical Oncology (ASCO) Annual Meeting, 29 May-2 June 2020


A cross-sectional study examining the effects of patient information level on healthcare experience in 2 patient populations: Extranodal natural killer T-cell lymphoma (ENKTL) and Waldenstrom Macroglobulinemia (WM).

Blood, 134(Suppl 1), 3422. DOI: 10.1182/blood-2019-123479

Presented at the 61st American Society of Hematology (ASH) Annual Meeting & Exposition, Orlando, FL, USA, 7-10 December 2019

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A cross-sectional study of unmet needs of lymphoma patients in patient-doctor communication: Follicular lymphoma (FL) and diffuse large B-cell lymphoma (DLBCL).

Blood, 134(Suppl 1), 4718. DOI: 10.1182/blood-2019-123413

Presented at 61st American Society of Hematology (ASH) Annual Meeting & Exposition, Orlando, FL, USA, 7-10 December 2019

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A comparative analysis of CLL and DLBCL patients’ level of understanding after initial doctor’s appointment.

DOI: 10.13140/RG.2.2.14672.43522

Presented at the XVIII International Workshop on CLL (iwCLL), Edinburgh, Scotland, 20-23 September 2019

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A cross-sectional study examining how knowledge of lymphoma subtype affects the patient experience.

Hematological Oncology, 37(S2), 543-544. DOI: 10.1002/hon.230_2631

Presented at the 15th International Conference on Malignant Lymphoma, Lugano. Switzerland, 18-22 June


Correlation of lymphoma patient information level with healthcare experience

Blood, 132(supplement 1): 4782. DOI: 10.1182/blood-2018-99-115392

Presented at the 60th American Society of Hematology (ASH) Annual Meeting & Exposition, San Diego, CA, USA, 1-4 December 2018

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