Salt Lake City,
The purpose of the PaTH Network IPF Clinician-Patient Partnership Cohort is to use clinical
data from electronic health records (EHR) and patient reported outcomes (PRO) to answer
questions of clinical importance to patients with Idiopathic Pulmonary Fibrosis, providers,
and other stakeholders.
The primary objective is to create the PaTH Network IPF Clinician-Patient Partnership Cohort,
which will allow the conduct of patient-centered observational studies on IPF across the
multiple institutions (Hershey Penn State, University of Pittsburgh, Temple University) of
the PaTH network. Creating the IPF Clinician-Patient Partnership Cohort will involve:
1. Recruiting patients with IPF to participate in the PaTH Network IPF Clinician-Patient
2. Administering surveys to the IPF Clinician-Patient Partnership Cohort approximately
every 3 months to collect patient reported outcomes (PROs)
3. Merging individual patient health record data into the IPF Clinician-Patient Partnership
4. Tracking whether the patient participant has biospecimens in a PaTH site biorepository
and prepare for possible sharing of biospecimens in future studies.
5. Determining if an automated procedure for identifying duplicate patients across PaTH
institutions without the use of protected health information (PHI) is valid compared to
a manual matching procedure using PHI.
6. Identifying potential participants for future research studies.
The secondary objectives are to use the PaTH Network IPF Clinician-Patient Partnership Cohort
to answer patient-centered research questions including:
1. What is the prevalence of gastroesophageal reflux disease (GERD) in IPF, and what effect
does GERD and its treatment have on IPF disease progression, quality of life, and
2. What is the association of oxygen use with survival, quality of life, exercise
tolerance, neurocognitive function, and dyspnea?
3. How often do IPF patients have advance directives, how often are advance directives
documented in the electronic health record, and does having an advance directive
influence how/where IPF patients die, their health care utilization, satisfaction with
care, and quality of life?
- The target study population is adults identified as having IPF (through the PaTH IPF
computable phenotype algorithm or a local IPF registry).
- Age <18 years
- Not proficient in English
- Has not had at least one outpatient encounter in the past 18 months at the PaTH health
system's pulmonary specialty clinic through which they are recruited
- Lung transplant
- Already enrolled in the PaTH Clinician-Patient Partnership Cohort at another PaTH