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Neuroendocrine Tumors - Patient Reported Outcomes
Neuroendocrine Tumors - Patient Reported Outcomes

NCT05064150

Active Not RecruitingN/A

Sponsor: University of Iowa

Conditions: Neuroendocrine Tumors, Gastroenteropancreatic Neuroendocrine Tumor, Lung Neuroendocrine Neoplasm, Neuroendocrine Carcinoma

Countries: United States

With so many therapeutic options available (i.e.: biologic therapy, liver directed therapy, radiotherapy and chemotherapy), the purpose of this project is to partner with patients on comparative effectiveness research (CER) to achieve the goal of alleviating undue toxicity, and optimizing effectiveness and sequencing of therapy for neuroendocrine tumors (NET) patients. We will conduct a study of all newly occurring GEP-NET and lung NET cases aged 18 years and older diagnosed between 01/01/2018 through 09/30/2024 across 14 sites participating in the National Patient-Centered Clinical Research Network (PCORnet), enrolling an average of 215 patients per site over the 3 year study period (2515 patients total), allowing up to 60 months of follow-up for medical record outcomes. Participants will complete four online or paper surveys over 18 months; these surveys will focus on patient-reported outcomes, including questions on quality of life, treatment decisions, and experiences with cancer care. Survey data will be linked to participant medical record data to achieve study aims.

Eligibility overview

Sex: ALL

Age: 18 Years to —

Healthy volunteers: No

Study type: OBSERVATIONAL

Eligibility criteria
Inclusion Criteria:

* (1) Adults age 18 years or older at time of NET diagnosis
* (2) Diagnosis of GEP-NET or lung NET between 1/1/2018 and 09/30/2024, as evidenced by
* (a) medical record information on diagnoses and/or medications and/or treatments and/or test results and/or clinical notes and/or procedures and/or encounters and/or tumor characteristics, and
* (b) patient self-attestation of their diagnosis.

Exclusion Criteria:

Any GEP-NET/Lung NET prior to 1/1/18, as evidenced by medical record information on diagnoses and/or medications and/or treatments and/or test results and/or clinical notes and/or procedures and/or encounters and/or tumor characteristics
Locations (14)
  • Gainesville, Florida, United States
  • Iowa City, Iowa, United States
  • Kansas City, Kansas, United States
  • Ann Arbor, Michigan, United States
  • Minneapolis, Minnesota, United States
  • Rochester, Minnesota, United States
  • Chapel Hill, North Carolina, United States
  • Columbus, Ohio, United States
  • Pittsburgh, Pennsylvania, United States
  • Charleston, South Carolina, United States
  • Nashville, Tennessee, United States
  • Dallas, Texas, United States
  • Salt Lake City, Utah, United States
  • Milwaukee, Wisconsin, United States