About this study
Nodular lymphocyte-predominant Hodgkin lymphoma (NLPHL) is a rare cancer of the lymphatic system, which helps fight infections. NLPHL can be monitored over time or treated in many different ways. Doctors want to learn more about quality of life, symptom experience, and emotional health for people with NLPHL.
The goal of this study is to better understand how people with NLPHL feel during and after treatment. We want to create and test a system that helps researchers collect this information in a safe and dependable way. This will show if it is possible to gather this type of data from many patients over time.
Researchers will ask patients to complete surveys about their physical health, emotions, and daily activities. These surveys will help track how patients’ experiences change over time based on their age, disease stage, and the type of treatment they receive.
The study will also ask each patient’s care providers to answer questions about the patient’s health. Along with the patient report, these details will help us learn what life is like for people with NLPHL and how care can be improved in the future.
Participants will complete surveys at the start of the study and every 3 months for 1 year. Surveys can be done online.
Taking part in this study may not directly benefit participants, but it will help doctors learn more about how having NLPHL and different treatments affect quality of life. The information collected will guide future care and help researchers design treatments that cause fewer side effects. The goal is to improve long-term health and well-being of children and adults living with this rare cancer.
Eligibility overview
- Diagnosis of nodular lymphocyte-predominant Hodgkin lymphoma
- 8 years and older