Enrolling by Invitation

Neuroendocrine Tumors – Patient Reported Outcomes (NET-PRO)

Posted on by Jodi Snare

Study Updated 03/25/2024

ClinicalTrials.gov#: NCT05064150
Study Design: Prospective Observational
PCORnet Infrastructure: Collaboration, CDM, Engagement, Single IRB
Principal Investigator: Michael O’Rorke
Site Name: University of Iowa
PCORnet® Network Partner: GPC
Funder: Patient-Centered Outcomes Research Institute (PCORI), project website
Funding Date: 2021
Study Duration: 2021 – 2024
Participating Clinical Research Networks: GPC, OneFlorida+, PaTH, STAR
Therapeutic Area: Oncology
Condition: Neuroendocrine Tumors; Gastroenteropancreatic Neuroendocrine Tumor; Lung Neuroendocrine Neoplasm; Neuroendocrine Carcinoma
Population: 18 Years and older (Adult, Older Adult)
Status: Enrolling by Invitation

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

Preserving Kidney Function in Children with Chronic Kidney Disease (PRESERVE)

Posted on by Jodi Snare

Study Updated 03/05/2024

Study Website: Preserving Kidney Function in Children with Chronic Kidney Disease
ClinicalTrials.gov#: NCT05169411
Study Design: Retrospective Observational
PCORnet Infrastructure: Collaboration, CDM (+supplemental data), Engagement, Single IRB
Principal Investigator: Christopher Forrest
Site Name: The Children’s Hospital of Philadelphia
PCORnet® Network Partner: PEDSnet
Funder: Patient-Centered Outcomes Research Institute (PCORI)
Funding Date: 2021
Study Duration: 2021 – 2024
Participating Clinical Research Networks: GPC, OneFlorida+, PaTH, PEDSnet, STAR
Therapeutic Area: Renal
Condition: Chronic Kidney Disease Stage 2; Chronic Kidney Disease Stage 3; Pediatric Kidney Disease
Population: 1 Year to 17 Years (Child)
Status: Enrolling by Invitation

Research Question(s):

Which blood pressure monitoring strategies, urine protein monitoring strategies, and blood pressure medication strategies are most effective in preserving kidney function in pediatric patients with Chronic Kidney Disease (CKD), and what is the lived experience of families and patients living with pediatric CKD?