Research

The national scope of PCORnet-accessible data, plus embedded expertise and patient insights, makes the Network a powerful tool for researchers.

Fuel Large-Scale Research in Diabetes, Obesity, Heart Failure, and Cancer

Researchers use PCORnet to study metabolic pathways.

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Trustworthy Data

Learn how the PCORnet® Common Data Model enables researchers to conduct research to better understand treatment options for patients with endocrine tumors.

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Cardiovascular Researchers Have Unique Challenges

PCORnet infrastructure is designed to help.

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Engage Patients

Learn how the Preventable Study engages older adults to improve their health outcomes.

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Research Made Easier

PCORnet infrastructure helps researchers ask and answer clinical questions that impact patients’ lives through better tools and processes.

Tools to speed study start-up

Use these tools powered by PCORnet® Network Partners to accelerate research.

Investigators, patients, and stakeholder engagement teams affiliated with PCORnet have deep experience in conducting a range of study designs that include meaningful stakeholder engagement. The PCORnet infrastructure offers the following resources to researchers interested in using PCORnet to support both interventional and observational research:

  • PCORnet® Clinical Research Networks (CRNs) that can participate as clinical sites in randomized research trials
  • Actively engaged patients, clinicians, and health systems
  • Preexisting, standardized, curated, and research-ready clinical data on clinical outcomes and details of specific procedures, treatments, disease severity, and comorbid illnesses through the PCORnet® Common Data Model (CDM )
  • Support for trial design and feasibility assessments and to inform study power calculations

Examples of how PCORnet can help facilitate research.

Question
How can we improve the ability of pediatric patients and their caregivers to select surgical treatment options for kidney stones and to enable urologists to use techniques that result in the best outcomes for patients?

Patient-Centered Comparative Clinical Effectiveness Research

Project: Pediatric KIDney Stone (PKIDS) Care Improvement Network
Question

How can we improve the ability of pediatric patients and their caregivers to select surgical treatment options for kidney stones and to enable urologists to use techniques that result in the best outcomes for patients?

Study
Compared the experiences of 1,290 eligible children in 23 pediatric healthcare systems after:
  • Ureteroscopy (URS)
  • Shock wave lithotripsy (SWL)
  • Percutaneous nephrolithotomy (PCNL)
Result
  • This study is ongoing.
  • While PKIDS currently focuses on the surgical management of kidney stone disease in children, the network for the study provides a platform to evaluate optimal diagnostic approaches and medical treatments for pediatric nephrolithiasis by taking advantage of PCORnet infrastructure and strong collaborative relationships with urology, radiology, nephrology, and other key stakeholder groups.

Question
Which care options work best to improve symptom management, treatment outcomes, and quality of life among patients with neuroendocrine tumors?

Trustworthy Electronic Health Record (EHR) Data

Project: Comparing the Effects of Different Treatment Approaches for Neuroendocrine Tumors on Patient-Reported Outcomes -- The NET-PRO Study
Question
Which care options work best to improve symptom management, treatment outcomes, and quality of life among patients with neuroendocrine tumors?

Study
  • Patients with neuroendocrine tumors have many different therapeutic options available (i.e.: biologic therapy, liver directed therapy, radiotherapy, and chemotherapy.)
  • This study is partnering with patients find ways to alleviate undue toxicity and optimize effectiveness and sequencing of therapy for neuroendocrine tumors (NET) patients.
  • It will identify the best order of treatments and relationship to patient outcomes and survival.
Result
  • 14 sites participating in PCORnet networks were able to identify 3,000 patients aged 18 years and older who were diagnosed between January 2018 through December 2023 over 3 years.
  • Researchers will follow medical record outcomes for up to 60 months.

Question
Can taking a commonly used heart medication prevent dementia in adults over the age of 75?

Innovative Patient Engagement

Project: PREVENTABLE (Pragmatic Evaluation of Events and Benefits of Lipid-Lowering in Older Adults)
Question
Can taking a commonly used heart medication prevent dementia in adults over the age of 75?

Study
  • 20,000 patients aged 75 and older.
  • 100 U.S. sites partnered with PCORnet & the National Veterans Affairs Network.
  • Pragmatic design used existing EHR/Medicare data plus phone surveys.
  • Medications shipped directly to patients.
Result
  • Embedded expertise in PCORnet fueled rapid enrollment of the largest trial in people aged 75+ to date.
  • Participants can join the study at home by phone or videoconference and receive medication through the mail.
  • Broad dissemination via New York Times article, AARP publications, & local senior guides.

Question
Can a reusable platform reduce patient/investigator burden and streamline evidence generation around new programs or technologies designed to help improve blood pressure control?

Implementation Science Research

Project: Using PCORnet to Compare Blood Pressure Control Strategies
Question
Can a reusable platform reduce patient/investigator burden and streamline evidence generation around new programs or technologies designed to help improve blood pressure control?
Study
This platform supported three demonstration studies:
  1. BP Track, a national surveillance project.
  2. BP MAP, a cluster randomized controlled trial.
  3. BP Home, an individual level randomized controlled trial.
Result
  • Pragmatic design allowed for direct patient engagement and collection of patient-generated health data (Eureka.)
  • Assessed EHR data from 25 participating health systems via PCORnet.
  • Information drawn directly from the EHRs.

Question
Which aspirin dose offers the right balance of effectiveness and minimal risk of bleeding for people living with heart disease?

Rapid Participant Recruitment

Project: Comparing the Safety and Effectiveness of Low-Dose versus High-Dose Aspirin to Prevent Problems from Heart Disease -- The ADAPTABLE Study -- A PCORnet® Study
Question
Which aspirin dose offers the right balance of effectiveness and minimal risk of bleeding for people living with heart disease?
Study
  • Pragmatic clinical trial of 15,000 patients who are living with heart disease.
  • Randomly assigned in a 1:1 ratio.
  • Receive an aspirin dose of 81 mg/day vs. 325 mg/day.
  • Build a cadre of “Adaptors,” patient partners with full study participation from protocol design through dissemination.
Result
  • Over 15,000 patients enrolled with only 40 sites over 38 months.
  • Adaptors participated in three key engagement efforts:
    • Newsletter for enrolled patients (493 patients have shared their patient story in this forum).
    • Revised study communication to make it more understandable for a patient audience.
    • Educated clinicians on what aspects of the study were engaging them to improve participation rates.
A doctor listening to his patient's heartbeat with a stethoscope

PCORnet® Studies

PCORnet® Studies are helping to answer clinical questions most important to patients and building infrastructure for better research in the future.

Search all PCORnet® Studies here.