Comparative Effectiveness Research for Neuroendocrine Tumors (NET-PRO)

PI(s): Michael O'Rorke, University of Iowa

Project Summary: To enroll a prospective cohort of patients with gastroenteropancreatic neuroendocrine tumors (GEP-NET) and lung neuroendocrine tumors (lung NET) to in order to monitor the experience of symptom burden, therapeutic selection, and associated cumulative toxicities, and create infrastructure for comparative effectiveness research (CER) studies in this rare disease setting. Our goals are to:

1. Implement a novel customized NET patient portal co-produced with various stakeholders and NET patients – using an established tool that will facilitate participant engagement over time.
2. Harvest and mine the electronic medical records (EMR) of GEP-NET/lung NET patients at collaborating PCORnet® sites to examine the influence of patient and tumor characteristics on treatment selection, therapy toxicity, and disease progression.
3. Use the data mined in aims 1 and 2 to compare toxicity and effectiveness of various treatments
4. Disseminate lessons learned and expand enrollment of the prospective cohort to other PCORnet® sites, patient organizations, and additional rare diseases.

Study Design: Multi-CRN Data only Observational

Sponsor: PCORI®