RecruitingNot Applicable

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

United States100 participantsStarted 2024-04-04

Plain-language summary

There is a pressing need to measure patient-reported symptoms in patients of all ages diagnosed with nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL). This study aims to measure longitudinal symptom burden and treatment tolerability utilizing validated patient-reported outcomes (PROs) instruments. Primary Objective: * To develop the data collection infrastructure required to prospectively collect longitudinal electronic patient-reported outcomes (PROs) survey instruments in adult and pediatric patients diagnosed with NLPHL. Secondary Objective: * To examine differences in baseline and longitudinal changes in PROs based on disease characteristics, disease status, and treatment strategies among adult and pediatric patients diagnosed with NLPHL.

Who can participate

Age range8 Years

SexALL

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Inclusion Criteria * 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 Criteria * 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 they're measuring

Estimates of response rates

Timeframe: At baseline, 3, 6, 9, and 12 months

Patterns of individual per-patient survey completion

Timeframe: At baseline, 3, 6, 9, and 12 months

Trial details

NCT IDNCT06098430

SponsorSt. Jude Children's Research Hospital

Sponsor typeOTHER

Study typeOBSERVATIONAL

Primary completion2026-12-31

Contact for this trial

Valerie Crabtree, PhD

866-278-5833 referralinfo@stjude.org