Cardiovascular

Utilizing PCORnet to support transition from pediatric to adult centered care and reduce gaps in recommended care in patients with congenital heart disease

Posted on by Jodi Snare

Page last updated February 4, 2026

ClinicalTrials.gov#: NCT05185232
Study Design: Retrospective Observational
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator:Thomas Carton and Anitha John
Institution: Louisiana Public Health Institute (LPHI)
PCORnet® Network Partner: REACHnet
Funder: Patient-Centered Outcomes Research Institute (PCORI); (project webpage)
Funding Date: 2021
Study Duration: 2021 – 2024
Participating PCORnet® Clinical Research Networks: INSIGHT, OneFlorida+, PEDSnet, REACHnet
Therapeutic Area: Cardiovascular, Rare Diseases
Condition: Congenital Heart Disease; Comorbidities and Coexisting Conditions
Age Range: 18 Years and older (Adult,  Older Adult)
Status: Completed

Research Question(s):

  1. How does receiving current recommended care affect long-term outcomes and healthcare needs amongst the numerous rare disease subtypes of congenital heart defects?
  2. What factors are associated with gaps in recommended care?
  3. Do patients report feeling better when they remain in specialty care?

Implementation of Patient-Reported Outcomes Measurement in Routine Clinical Practice for Heart Patients in PCORnet

Posted on by Jodi Snare

Page last updated April 14, 2026

Study Design: Prospective Observational Study
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Justin Bachmann
Institution: Vanderbilt University Medical Center
PCORnet® Network Partner: STAR
Funder: Patient-Centered Outcomes Research Institute (PCORI); (Project webpage)
Funding Date: 2018
Study Duration: 2019 – 2021
Participating PCORnet® Clinical Research Networks: PaTH, STAR
Therapeutic Area: Cardiovascular
Condition: Congestive Heart Failure
Age Range: 75 Years and older (Older Adult )
Status: Completed

Research Question(s):
Can PCORnet be leveraged to implement patient-reported outcome measures in routine clinical practice for heart failure patients at three different institutions?

Pragmatic Evaluation of Events and Benefits of Lipid-lowering in Older Adults (PREVENTABLE)

Posted on by Jodi Snare

Page last updated April 14, 2026

Study Website: PREVENTABLE
ClinicalTrials.gov#: NCT04262206
Study Design: Intervention Trial
PCORnet Infrastructure: Common Data Model (CDM), Single IRB, Patient partners or engagement
Principal Investigator: Karen Alexander
Institution: Duke Clinical Research Institute
Funder: Federal (NIH); (Project webpage)
Funding Date: 2019
Study Duration: 2020 – 2027
Participating PCORnet® Clinical Research Networks: ADVANCE, GPC, INSIGHT, OneFlorida+, PaTH, REACHnet, STAR
Therapeutic Area: Cardiovascular
Condition: Cognitive Impairment, Mild; Dementia; Cardiovascular Diseases
Age Range: 75 Years and older (Older Adult)
Status: Recruiting

Research Question(s):
Can a statin help prevent dementia and disability in adults aged 75 or older, as well as heart attacks and other cardiovascular-related deaths, while not increasing risks of adverse health outcomes?

Primary Publication(s):

Sachs BC, Rapp SR, Kistler CE, et al. The pragmatic evaluation of events and benefits of lipid-lowering in older adults (PREVENTABLE) trial: study design and procedures for cognitive assessment and adjudication. Alzherimers. Dement., 2021; 17(Supp.9). doi.org/10.1002/alz.054022