Optimizing the treatment of NLPHL for every adult and child.

The Global nLPHL One Working Group (GLOW) is a multidisciplinary collaborative research group that facilitates international collaboration to optimize the diagnosis, care, and outcomes for (and with) patients diagnosed with NLPHL worldwide.

 

We serve as a coordinated research hub to drive NLPHL discovery across the age continuum.

Why study NLPHL?

NLPHL is distinct from other Hodgkin lymphomas.

NLPHL is highly treatable, but its (generally) slow-growing nature, likelihood of late relapse, and risk of transformation to more aggressive types of lymphoma over 20 years after initial diagnosis distinguish it from classic Hodgkin lymphoma (cHL).

There is no standard of care for patients with NLPHL.

Historically, NLPHL has been categorized as a subtype of Hodgkin lymphoma and treated in the same manner as classic Hodgkin lymphoma despite clinically and biologically significant differences between these two entities.

Survival rates for patients with NLPHL are high, but the cumulative effects of treatment(s) over the lifecourse can be detrimental.

Given a higher risk for relapse regardless of initial treatment intensity as well as a long life expectancy after NLPHL diagnosis, patients and clinicians must consider cumulative toxicities of treatment that may result over time. Tailored care for NLPHL is warranted for many patients, but research is lacking on the most appropriate approach(es) by age, risk factors, and patient goals. Unfortunately, a 2022 GLOW publication indicates that many patients still receive treatment intensities designed for classic Hodgkin lymphoma.

The rarity of NLPHL can be a challenging diagnosis and care experiences for patients, care partners, and clinicians.

Findings from a 2025 GLOW publication indicate that a diagnosis of NLPHL can be a challenging and lonely experience for patients, care partners, and their clinicians given its rarity and limited data. The scarcity of long-term outcomes data (both clinical and patient-reported) makes it difficult to learn from past patients’ experiences.

No frontline Hodgkin lymphoma trial anywhere in the world currently includes patients with NLPHL.

Unlike classic Hodgkin lymphoma, NLPHL does not typically express the CD30 marker. When researchers began using the antibody-drug conjugate brentuximab vedotin, which targets CD30-positive cells, in Hodgkin lymphoma clinical trials the early 2000s, patients with NLPHL were excluded from frontline Hodgkin lymphoma clinical trials. Because of this, no additional data is being collected to establish a standard of care for these patients.

There is uncertainty regarding how to best classify NLPHL.

Debates about how to classify NLPHL have continued since subtypes of Hodgkin lymphoma were first identified. NLPHL was not recognized as a distinct entity by the WHO until 1997, and researchers are currently divided between whether to classify NLPHL as a type of Hodgkin lymphoma or as a type of non-Hodgkin lymphoma. To better understand NLPHL, researchers need a centralized NLPHL tissue bank for further analyses.

Scientific understanding of NLPHL (and of how to optimize care for patients with NLPHL) lags behind that of more common cancers.

NLPHL is rare. It comprises only 5-10% of Hodgkin lymphoma cases, which makes it challenging to study due to fewer patients, data, and biospecimens available for research. Retrospective NLPHL data that do exist were collected in various ways at different institutions in numerous countries, posing challenges to aggregating sufficient numbers of cases for meaningful discovery.

Many current gaps in knowledge about NLPHL and optimization of care can be addressed via global collaboration.

Research groups investigating NLPHL have been largely fragmented by age group (pediatric versus adult clinicians) and by region. Coordinating research efforts and streamlining prospective data dictionaries and biospecimen acquisition facilitates the pooling of larger data sets and biospecimen samples for higher-powered research.

What makes GLOW different from prior NLPHL research efforts?

We are learning from past research and experience, so we:

  • Created the first global network of pediatric, adolescent, and adult Hodgkin lymphoma experts to study NLPHL together.
  • Recruited experts in consortium governance and consortium management to facilitate international, multi-specialty collaboration, streamline administrative tasks to maximize time and resources, and coordinate core research activities.
  • Partner with patient and caregiver advocates to inform research priorities, educational opportunities, and community engagement.
  • Maintain a database of over 2,000 cases of NLPHL representing all age groups and all stages worldwide to discover risk and predictive factors.
  • Created a centralized tissue bank for NLPHL pathology and translational biology research.
  • Collaborate with NODAL and Data for the Common Good to incorporate data standards and streamline international data sharing workflows.

Get Involved!

ABOUT

The Global nLPHL One Working Group is committed to improving outcomes for all patients diagnosed with nodular lymphocyte-predominant Hodgkin lymphoma.    

JOIN

Interested in joining GLOW? Complete our Tell Us About You form!

CONTACT

GLOW@urmc.rochester.edu

 

 

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Images of NLPHL cells provided by Rachel Mariani, MD