Neuroendocrine Tumors - Patient Reported Outcomes (NET-PRO)

STUDY BASICS

Are you 18 or over with a gastroenteropancreatic (GEP) or lung neuroendocrine tumor (NET)? You may be eligible to participate in a research study based on your NET diagnosis. Compensation is provided.

STUDY PURPOSE

NETs are typically slow growing in nature with prolonged survival and significant symptom burdens, however few studies have examined quality of life impacts. This study is being conducted for several reasons: to describe the symptoms and quality of life with different NET treatments, to learn what patient and tumor factors influence the order that treatments are given, and to learn whether treatment order affects quality of life, symptoms, and survival. This study will also help others conduct research on NETs and other rare diseases. 

COULD THIS STUDY BE RIGHT FOR YOU?

• Ages 18 and older 
• First diagnosed with GEP-NET or lung NET between 01/01/2018 and 9/30/2024 

WHAT PARTICIPANTS CAN EXPECT

This study involves taking four online (or paper) surveys spaced six months apart. Each survey asks questions about your health and health care, and many questions are related to your neuroendocrine tumor. The surveys focuses on patient-reported outcomes, including questions on quality of life, treatment decisions, and experiences with cancer care.The first survey will take about 40 minutes to complete; the other three surveys will take about 20 minutes each to complete. Information from your medical record will be collected for about 36 months from the time of study enrollment.