Cohort Update: Idiopathic Pulmonary Fibrosis

Dr. Rebecca Bascom at a Steering Committee meeting at Penn State.

Idiopathic Pulmonary Fibrosis, often known as IPF, is a rare and often severe lung condition that affects 14 to 28 people per 100,000 individuals in the U.S. population. PaTH’s IPF team meets weekly and includes researchers from Johns Hopkins University, Pennsylvania State University, Temple University, University of Pittsburgh, and University of Utah. Two patient partners—Jim Carns and Jim Uhrig—also attend to provide the patient perspective and guidance that is so central to the PaTH mission.

Dr. Rebecca Bascom, M.D., M.P.H, says the IPF group has been focusing on topics that arose from discussions in the IPF support group at Penn State, the patient partners, and the IPF investigators. One of their first challenges was to develop a “computable phenotype” – a specific plan for how to identify IPF patients using data from electronic health records.

In May, the group presented posters at the American Thoracic Society in San Francisco. Their posters compared the characteristics of the IPF cohort derived from a computable phenotype with that of characteristics of IPF patients derived from large pharmaceutical trials. Twenty percent of the PaTH IPF cohort was over 80 years old. This age group, a substantial minority of the IPF population, has been mostly excluded from IPF clinical trials. Researchers and clinicians alike are interested to see how IPF behaves differently in these patients versus adults in their 60s or 70s.

Dr. Bascom notes that the IPF cohort’s work hasn’t slowed down since then. In June, the patients participating in the IPF PaTH survey completed their fourth and final survey. Dimmock, a researcher at Penn State who recently successfully defended her Master’s thesis on the computable phenotype in IPF, says “We owe it to them – and to all the IPF patient participants – to get this work out to the greater IPF community."

The team is now looking forward to learning from these survey data.

“Overall, the IPF team has been a wonderfully engaged and energetic group,” says Dr. Bascom. “I am periodically awestruck at the scope and complexity of this visionary project—we are truly creating a new world—but the fundamental purpose of the work, which is to hear the patient voice, is the ancient calling of medicine.”

Coming up, researchers with the IPF cohort plan to attend the September 2016 International Conference on Lung Fibrosis, for which they submitted three abstracts on advance directives, neuro-cognitive function, and the PCORI patient engagement standard. The group will also be writing papers to submit to a range of journals and other forums, as well as brainstorming about future work together.

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