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

NCT06098430 · St. Jude Children's Research Hospital
In plain English

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Official title
A Pilot Study of Prospective Patient-Reported Outcomes and Quality of Life in Adult and Pediatric Patients With Nodular Lymphocyte-Predominant Hodgkin Lymphoma (NLPHL)
About this study
The broad aim of this study is to develop the foundational data management infrastructure required to prospectively collect longitudinal electronic patient-reported outcomes (PROs) survey instruments in adult and pediatric patients diagnosed with nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL). The study team further aims to elucidate how PROs change over time and how they may be affected by different patient, disease, and treatment characteristics.
Eligibility criteria
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.
Study design
Enrollment target: 100 participants
Age groups: child, adult, older_adult
Timeline
Starts: 2024-04-04
Estimated completion: 2028-01-31
Last updated: 2026-05-20
Primary outcomes
  • Estimates of response rates (At baseline, 3, 6, 9, and 12 months)
  • Patterns of individual per-patient survey completion (At baseline, 3, 6, 9, and 12 months)
Sponsor
St. Jude Children's Research Hospital · other
Contacts & investigators
ContactValerie Crabtree, PhD · contact · referralinfo@stjude.org · 888-226-4343
ContactJessi Rogers Blake, BSN,RN,CCRP · contact · jessi.rogers-blake@stjude.org · 901-595-4108
InvestigatorValerie Crabtree, PhD · principal_investigator, St. Jude Children's Research Hospital
InvestigatorAjay Major, MD, MBA · principal_investigator, University of Colorado, Denver
InvestigatorAnna Jones, PhD · principal_investigator, St. Jude Children's Research Hospital
All locations (7)
Stanford University Medical CenterRecruiting
Palo Alto, California, United States
University of Colorado HospitalRecruiting
Aurora, Colorado, United States
Dana-Farber Cancer InstituteRecruiting
Boston, Massachusetts, United States
Hackensack University Medical CenterRecruiting
Hackensack, New Jersey, United States
Memorial Sloan Kettering Cancer CenterRecruiting
New York, New York, United States
University of Rochester Medical CenterRecruiting
Rochester, New York, United States
St. Jude Children's Research HospitalRecruiting
Memphis, Tennessee, United States
Patient-Reported Outcomes and Quality of Life in Adult and Pediatric Patients With Nodular Lymphocyte-Predominant Hodgkin Lymphoma (NLPHL) · TrialPath