# Predicting survival and planning for lung transplantation in severe cystic fibrosis

> **NIH NIH K23** · UNIVERSITY OF WASHINGTON · 2020 · $189,324

## Abstract

Kathleen Ramos, MD plans for a career as a clinical outcomes researcher in the fields of cystic fibrosis (CF)
and lung transplantation. The objective of the proposed career development award is to provide necessary
training in research methods to facilitate Dr. Ramos' transition to independent research. The mentorship
available at the University of Washington in the Division of Pulmonary and Critical Care Medicine is
outstanding. Dr. Ramos' mentors are experts in biostatistics, clinical epidemiology, and qualitative research
methods – skills that she hopes to develop and refine during the proposed award. She will pursue advanced
coursework at the nationally-renowned University of Washington School of Public Health and will have
personalized instruction from her mentors. Dr. Ramos has developed, over the last 3 years, a multi-pronged
research program using existing data and questionnaires to start to address a problem in the CF community that
she has been central in highlighting – the limited referral of patients with severe CF for lung transplantation.
As patients with CF age, lung function declines and eventually reaches a threshold associated with increased
pulmonary symptoms and increased mortality, which may prompt evaluation for lung transplantation; typically,
the referral threshold for forced expiratory volume in one second (FEV1) is <30% of the predicted normal value.
Dr. Ramos showed that 35% of patients with CF in the national CF patient registry, who clearly met lung
function-based referral criteria, were not referred for lung transplant evaluation. She then demonstrated that
despite this low rate of referral, CF physicians felt that an FEV1 < 30% was the most important clinical variable
that should drive referral. Subsequently, her survival analysis of a national cohort of CF patients with FEV1
<30% revealed improved transplant-free survival when compared to historical estimates. Dr. Ramos delineated
the clinical conundrum facing clinicians: despite the improved transplant free survival after reaching an FEV1 of
< 30%, 10% of the population still dies without transplant within the first year of reaching this threshold.
The objectives of the planned research include: 1) identification of patients with CF and advanced lung disease
who are at the highest risk of short-term death using predictive modeling; 2) serial measurement of clinical
parameters (i.e. six-minute walk test distance) to understand the feasibility of identifying clinically-relevant
changes over short time intervals; and 3) assessment of patient-reported barriers to timely lung transplant
evaluation. The overall study objective is to improve our ability to predict survival and plan for lung
transplantation in patients with severe CF. The work planned in this application leverages Dr. Ramos' unique
access to a large population of adult patients with CF and a large clinical lung transplant program. Data
generated from this project could affect how physicians and patients a...

## Key facts

- **NIH application ID:** 10001624
- **Project number:** 5K23HL138154-04
- **Recipient organization:** UNIVERSITY OF WASHINGTON
- **Principal Investigator:** Kathleen Jessica Ramos
- **Activity code:** K23 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2020
- **Award amount:** $189,324
- **Award type:** 5
- **Project period:** 2017-09-15 → 2022-08-31

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10001624

## Citation

> US National Institutes of Health, RePORTER application 10001624, Predicting survival and planning for lung transplantation in severe cystic fibrosis (5K23HL138154-04). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10001624. Licensed CC0.

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