Tracks symptoms and quality of life in people with nodular lymphocyte-predominant Hodgkin lymphoma
Records symptoms and treatment side effects over time in people with a rare lymphoma.
Plain-language title generated from the registry record
Registry title: Patient-Reported Outcomes and Quality of Life in Adult and Pediatric Patients With Nodular Lymphocyte-Predominant Hodgkin Lymphoma (NLPHL)
Key facts
- Where
- Aurora, Boston, Hackensack, Memphis, New York, Palo Alto, and Rochester, United StatesSee the 7 sites
Where in United States
- University of Colorado HospitalAurora, United StatesTaking people
- Dana-Farber Cancer InstituteBoston, United StatesTaking people
- Hackensack University Medical CenterHackensack, United StatesTaking people
- St. Jude Children's Research HospitalMemphis, United StatesTaking people
- Memorial Sloan-Kettering Cancer CenterNew York, United StatesTaking people
- Stanford University Medical CenterPalo Alto, United StatesTaking people
- University of Rochester Medical CenterRochester, United StatesTaking people
Questions to ask the study team
- How often do I need to come in, and for how long each time?
- Are travel costs paid?
- Can I keep my own doctor?
- What happens if I want to stop?
Trial details
- Who runs it
- St. Jude Children's Research Hospital
- Trial code
- NCT06098430
- Record updated
- 10 November 2026
- Original description
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.Read full original descriptionShow less
A Pilot Study of Prospective Patient-Reported Outcomes and Quality of Life in Adult and Pediatric Patients With Nodular Lymphocyte-Predominant Hodgkin Lymphoma (NLPHL)
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.
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: 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; Age 7 years or less; Patient or adult proxy does not have verbal and written English language proficiency; Inability or unwillingness of research participant or legal guardian/representative to give consent.