Scientific update from the Global NLPHL One Working Group (GLOW)

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Introduction There is no standard of care for patients diagnosed with nodular lymphocyte predominant Hodgkin lymphoma (NLPHL). No frontline clinical trials have included NLPHL patients since the 2010’s, thus hindering NLPHL research progress. The Global NLPHL One Working Group (GLOW), an international research network initiated in 2020, collaboratively optimizes diagnosis, care, and outcomes for, and with, patients of all ages diagnosed with NLPHL. Methods Since 2020, GLOW established working groups and strategic projects to describe and address critical gaps in progressing NLPHL research worldwide. Four research committees, overseen by an executive committee, were tasked with initiating collaborative NLPHL research, with an additional committee tasked with disseminating research findings. Initial projects included building an international retrospective database, describing global practice patterns, and collecting baseline patient-reported outcomes. Recent projects explored healthcare professional, patient, and care partner research and care needs [ 1 ] [ 2 ] [ 3 ] [ 4 ]. Results In 5 years, GLOW has grown to include over 200 researchers and patient advocates from 34 countries, published 5 papers, and built the largest cohort of clinical NLPHL data to date. Its research roadmap (Palese et al. 2025), informed by NLPHL experts, patients, and care partners, outlines a strategic framework and initial objectives for NLPHL research. The GLOW practice patterns paper describes worldwide variation in NLPHL care between clinicians treating pediatric versus adult populations (Lo et al. 2022). In 2024, after expanding its early stage retrospective cohort (Binkley et al. 2020), GLOW published results from over 2000 patients across all ages and stages and created the risk-predictive Lymphocyte-Predominant International Prognostic Score (LP-IPS) (Binkley et al. 2024). These data show that progression-free survival curves continue to fall over time regardless of initial therapy intensity. Thus, care decisions over time must be strategic given that most patients (>70%) equire further treatment during their lifetime. GLOW continues to recruit patients on its NLPHLPRO study and is testing a decision aid for patients diagnosed with stage IA NLPHL. Conclusion GLOW’s strategic framework and initial priorities are working to deepen global, collaborative NLPHL research. GLOW is applying this knowledge in its planned prospective trial to establish a standard of care and optimize treatment for patients of all ages diagnosed with NLPHL. Publication History Article published online: 02 December 2025 © 2025. Thieme. All rights reserved. Georg Thieme Verlag KG Oswald-Hesse-Straße 50, 70469 Stuttgart, Germany

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