Lymphoma Coalition publishes research on the experiences of patients and care partners based on learnings from the Global Patient Survey on Lymphomas and CLL (GPS) and other projects.
It is imperative the issues raised by patients and their care partners through the biennial survey, interviews, focus groups and other initiatives are conveyed to the medical and research communities to improve care moving forward.
[{"id":40065,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/recent-research-publication-addressing-unmet-needs-in-gvhd\/","name":"recent-research-publication-addressing-unmet-needs-in-gvhd","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/GVHD-CABTheLancet-Publication-LinkedIn.png","alt":""},"title":"Recent Research Publication: Addressing Unmet Needs in GVHD","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Jul 31, 2025","dateGMT":"2025-07-31 18:40:00","modifiedDate":"2025-10-14 14:48:07","modifiedDateGMT":"2025-10-14 14:48:07","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":1,"sec":17},"status":"publish","excerpt":"This study explores the unmet needs of people living with graft-versus-host disease (GVHD) across Europe, focusing on improving patient care, support, and research. The research is based on insights gathered through a Community Advisory Board (CAB) organised by Lymphoma Coalition, which brought together patients, patient advocates, and members of the European Network on Chronic Graft-Versus-Host Disease (cGVHD) EUROGRAFT. This multidisciplinary approach ensured that the study reflected a wide range of perspectives and provided actionable recommendations for enhancing GVHD management."},{"id":39534,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/impact-of-unaddressed-side-effects-on-patient-trust-in-cll-treatment-plans\/","name":"impact-of-unaddressed-side-effects-on-patient-trust-in-cll-treatment-plans","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/Abstract1.png","alt":""},"title":"Unaddressed Side-Effects and Confidence in Care Plans in Lymphoma\/CLL","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Jun 15, 2025","dateGMT":"2025-06-15 18:50:00","modifiedDate":"2025-12-09 17:00:09","modifiedDateGMT":"2025-12-09 17:00:09","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/cll\/\" rel=\"category tag\">CLL<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/subtype-specific\/\" rel=\"category tag\">Subtype-Specific<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":2,"sec":56},"status":"publish","excerpt":"Presented during the EHA Congress on June 12-15 in Milan, Italy. Patients with lymphoma or CLL frequently experience side effects that affect their wellbeing. Managing these side effects is a crucial part of care. When left unaddressed, they can cause additional distress\u2014both physical and emotional. It is still unclear how this may affect a patient\u2019s confidence in their treatment plan.\n\nAim\nThis study examined whether patients with lymphoma or CLL who did not receive support for side effects were more likely to report low confidence in their treatment plan.\nObjective: Identify specific side effects most strongly linked to reduced confidence, providing insight into how better symptom management could improve patient experience."},{"id":39938,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/mapping-the-impact-of-treatment-side-effects-on-health-related-quality-of-life-in-lymphoma-and-cll-patients\/","name":"mapping-the-impact-of-treatment-side-effects-on-health-related-quality-of-life-in-lymphoma-and-cll-patients","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/2025-09-17-10_32_57-Greenshot.png","alt":""},"title":"Side-Effects and Health-Related Quality of Life in Lymphoma\/CLL - 2024 Global Patient Survey","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Mar 30, 2025","dateGMT":"2025-03-30 15:01:00","modifiedDate":"2025-10-14 14:49:49","modifiedDateGMT":"2025-10-14 14:49:49","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/qualityoflife\/\" rel=\"category tag\">Quality of Life<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/\" rel=\"category tag\">Psychosocial & Quality of Life<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/psychosocialqualityoflife\/qualityoflife\/\" rel=\"category tag\">Quality of Life<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":0},"status":"publish","excerpt":"Presented during the 2025 NCCN Annual Conference on March 28 \u2013 Sunday, March 30, 2025 at the Caribe Royale Orlando \u00b7 Orlando, FL. Our study sought to identify treatment-related side-effect drivers of health-related quality of life (HRQoL) degradation in a large sample of patients with lymphoma or chronic lymphocytic leukemia (CLL).\n\nThrough this process, we aim to provide symptom-specific information which will yield the potential for healthcare providers to employ mitigating strategies."},{"id":39981,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/mapping-therapy-related-side-effects-in-relapsed-large-b-cell-lymphoma\/","name":"mapping-therapy-related-side-effects-in-relapsed-large-b-cell-lymphoma","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/Abstract1-3.png","alt":""},"title":"Side-Effects in Relapsed Large B-Cell Lymphoma - 2022 Global Patient Survey","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Dec 12, 2023","dateGMT":"2023-12-12 17:21:00","modifiedDate":"2025-10-14 14:51:30","modifiedDateGMT":"2025-10-14 14:51:30","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/treatment\/\" rel=\"category tag\">Treatment<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/treatment\/\" rel=\"category tag\">Treatment<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":3,"sec":57},"status":"publish","excerpt":"Presented at the 65th ASH Annual Meeting and Exposition\n\nfrom 9-12 December 2023, in San Diego, California. The identification of side-effects associated with a particular therapy relies on univariable assessments of incidence across treatment arms. While this approach serves to set the groundwork for the establishment of causation, it is suboptimal when the incidence is small or when novel therapeutics with limited deployment are being examined.\n\nIn this study, we used a multivariate approach to aggregate multiple symptoms in order to segment our sample into those who had differing degrees of side-effect incidence. We used the resultant strata to examine the use of various therapies."},{"id":39976,"link":"https:\/\/lymphoma-stg.clarovantdigital.com\/an-assessment-side-effect-incidence-for-those-receiving-car-t-versus-other-treatments-in-the-setting-of-relapsed-or-refractory-disease\/","name":"an-assessment-side-effect-incidence-for-those-receiving-car-t-versus-other-treatments-in-the-setting-of-relapsed-or-refractory-disease","thumbnail":{"url":"https:\/\/lymphoma-stg.clarovantdigital.com\/wp-content\/uploads\/assessment-side-effect-incidence-cart-abstract.png","alt":""},"title":"Side-Effect Incidence in CAR-T vs. Other Treatments in R\/R Disease","author":{"name":"","link":"https:\/\/lymphoma-stg.clarovantdigital.com\/author\/firstname lastname\/"},"date":"Feb 17, 2023","dateGMT":"2023-02-17 17:16:00","modifiedDate":"2025-10-14 15:05:58","modifiedDateGMT":"2025-10-14 15:05:58","commentCount":"0","commentStatus":"open","categories":{"coma":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a>, <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>","space":"<a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/car-t-research\/\" rel=\"category tag\">CAR-T Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/lc-research\/\" rel=\"category tag\">LC Research<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/sideeffects\/\" rel=\"category tag\">Side Effects<\/a> <a href=\"https:\/\/lymphoma-stg.clarovantdigital.com\/category\/treatmentsideeffects\/\" rel=\"category tag\">Treatment & Side Effects<\/a>"},"taxonomies":{"post_tag":""},"readTime":{"min":2,"sec":55},"status":"publish","excerpt":"Presented at the 6th EBMT-EHA CAR-T Cell Meeting from 15-17 February 2023 in Valencia, Spain. Lymphoma Coalition (LC) supports over 90 member organizations across 54 countries. LC\u2019s overarching vision is equity in lymphoma outcomes across borders.\n\nIn the setting of relapsed\/refractory lymphoma, patients will have experienced at least one line of therapy and will likely be facing another to prolong life. CAR-T is gaining traction as a novel approach to treat relapsed\/refractory disease. Due to the novelty of CAR-T use, a knowledge gap exists regarding some of the rarer side-effects associated with CAR-T."}]