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Understanding Patient Experiences with Nodular Lymphocyte-Predominant Hodgkin Lymphoma (NLPHL)

This observational study is looking at how Nodular Lymphocyte-Predominant Hodgkin Lymphoma (NLPHL) affects patients' daily lives and their experience with treatments. Researchers want to understand symptoms and how well treatments are tolerated by collecting information directly from patients (patient-reported outcomes, or PROs). This study is open to both children (age 8 and older) and adults who have been diagnosed with NLPHL. The main goal is to set up a system to collect this important information over time. They will also look at how these experiences change over 12 months and how they might be different based on your disease and treatment. This study is currently not recruiting, as its status is unclear.

Study design
This is an observational study aiming to enroll 100 participants. It is not testing a specific intervention or drug.
What's involved
You would complete surveys at the start of the study, and then at 3, 6, 9, and 12 months.
Compensation
Not stated in the trial record.
Follow-up
Participants will be followed for 12 months after starting the study.

AI-generated from the public study record. Only the study team can confirm whether you're eligible — confirm details with them before making decisions.

NCT06098430

Patient-Reported Outcomes and Quality of Life in Adult and Pediatric Patients With Nodular Lymphocyte-Predominant Hodgkin Lymphoma (NLPHL)

Recruiting
Not specifiedAges 8+Observational
St. Jude Children's Research Hospital
~100 participants
Updated 2026-05-20 on ClinicalTrials.gov

At a glance

Recruiting sites
7 of 7 listed sites are recruiting right now
RecruitingSuspended, closed, or not yet open
What they're measuring
Estimates of response rates
Measured over At baseline, 3, 6, 9, and 12 months
+1 more outcome measured

Conditions

Nodular Lymphocyte-Predominant Hodgkin Lymphoma

Explore related trials

Nodular Lymphocyte-Predominant Hodgkin Lymphoma

NCT06098430

Where you'd take part

This study runs at 7 sites. They're the same protocol — you choose where, and that choice sets who your contact draft is addressed to.

  • Dana-Farber Cancer Institute

    Boston, Massachusettsstudy coordinator listed

    Recruiting

  • Hackensack University Medical Center

    Hackensack, New Jerseystudy coordinator listed

    Recruiting

  • Memorial Sloan Kettering Cancer Center

    New York, New Yorkstudy coordinator listed

    Recruiting

  • St. Jude Children's Research Hospital

    Memphis, Tennesseestudy coordinator listed

    Recruiting

  • Stanford University Medical Center

    Palo Alto, Californiastudy coordinator listed

    Recruiting

  • University of Colorado Hospital

    Aurora, Coloradostudy coordinator listed

    Recruiting

  • University of Rochester Medical Center

    Rochester, New Yorkstudy coordinator listed

    Recruiting

Sites open and close at different times, so the status above is per site — it can differ from the study's overall status.

Study leadership

  • Valerie Crabtree, PhD · PRINCIPAL_INVESTIGATOR · St. Jude Children's Research Hospital
  • Ajay Major, MD, MBA · PRINCIPAL_INVESTIGATOR · University of Colorado, Denver
  • Anna Jones, PhD · PRINCIPAL_INVESTIGATOR · St. Jude Children's Research Hospital
  • Matthew Rees, MD · PRINCIPAL_INVESTIGATOR · St. Jude Children's Research Hospital
  • Jamie Flerlage, MD, MS · PRINCIPAL_INVESTIGATOR · University of Rochester

Who to contact

Valerie Crabtree, PhD
[email protected]
888-226-4343
Email the study team

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Eligibility criteria

Inclusion

Age ≥ 8 years
Patient or their adult proxy must have verbal and written English language proficiency.
Pathologically confirmed diagnosis of nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL); patients with evidence of transformed lymphoma at diagnosis or subsequent development of transformed lymphoma after diagnosis are eligible.
Patients or their adult proxy must be able to provide consent.
Patients and/or adult proxy must be able to complete electronic quality of life surveys

Exclusion

Age 7 years or less.
Patient or adult proxy does not have verbal and written English language proficiency.
Patients with histologic evidence of a composite lymphoma (NLPHL with a concurrent diagnosis of Hodgkin lymphoma, indolent non-Hodgkin lymphoma, or gray zone lymphoma) at diagnosis are not eligible.
Inability or unwillingness of research participant or legal guardian/representative to give consent.

What this trial measures

  • Estimates of response ratesAt baseline, 3, 6, 9, and 12 months

    Percentage of survey completion at different timepoints

  • Patterns of individual per-patient survey completionAt baseline, 3, 6, 9, and 12 months

    Patterns of individual per-patient survey completion will be described. Non-responders, late responders, and patients with suboptimal item completion rates who require real-time outreach will be queried for individual challenges in completing PRO surveys for iterative improvements to infrastructure.