Page last updated November 5, 2026
ClinicalTrials.gov#: NCT05064150
Study Design: Prospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Michael O'Rorke
Institution: University of Iowa
PCORnet® Network Partner: GPC
Funder: Patient-Centered Outcomes Research Institute (PCORI), project website
Funding Date: 2021
Study Duration: 2021 – 2027
Participating PCORnet® Clinical Research Networks: GPC, OneFlorida+, Path, STAR
Therapeutic Area: Oncology, Rare Diseases
Condition: Neuroendocrine Tumors; Gastroenteropancreatic Neuroendocrine Tumor; Lung Neuroendocrine Neoplasm; Neuroendocrine Carcinoma
Age Range: 18 Years and older (Adult, Older Adult)
Status: Active, not recruiting
Research Question(s):
Which care options work, for whom, and under which circumstances in order to improve symptom management, treatment outcomes and quality of life among NET patients?
- Common treatment combinations and their relation to disease symptoms and quality of life
- Identification of the best ordering of treatments and relation to patient outcomes and survival
- The impact of patient traits and tumor characteristics on treatment choice(s) and survival
Primary Publication(s):
O’Rorke M, Chrischilles E; NET-PRO Study Investigators. Making progress against rare cancers: A case study on neuroendocrine tumors. Cancer. Published online January 20, 2024. doi:10.1002/cncr.35184
O’Rorke, M.A., McDowell, B.D., Xu, T. et al. Assessing Patient Characteristics in Neuroendocrine Tumor Research: A Comparison of the NET-PRO Study to SEER Population-Based Data. Endocrine 91, 141 (2026). doi: 10.1007/s12020-026-04611-w. PMID: 42043735; PMCID: PMC13121266.
Hourcade JP, O'Rorke M, Chrischilles E, et al. Personal Health Record Software for Neuroendocrine Tumors: Patient Centered Design Approach. JMIR Hum Factors. 2025;12:e68788. Published 2025 Jun 3. doi:10.2196/68788