A resource for people living with cystic fibrosis and their loved ones to explore individual’s experiences and up-to-date information about lung transplant.
Features
CF Stories
Explore stories from people living with cystic fibrosis (CF) as they share their experiences with lung transplant.
Resource Library
Find medical information, facts, and helpful resources as you consider lung transplant for yourself or as a caregiver.
Frequently Asked Questions
Read questions about lung transplant and answers provided by people with CF who have undergone lung transplant.
Explore Our Demo
View a short video that demonstrates the Take on Transplant™ tool. See how to register, take the initial My CF Stage survey, and view recommended content. Learn about the features of Take On Transplant.
Why Take on Transplant was developed
Lung transplant is a treatment option for advanced cystic fibrosis (CF) and has the potential to improve quality of life and extend a person's life by a decade or more. In the US, after reaching an FEV1 < 30% an equal number of people with CF die each year as undergo lung transplant. More than half of CF patients who die without transplant were never referred for lung transplant.
Our research shows that there are opportunities to help people with CF feel more prepared to discuss transplant as a treatment option. A survey demonstrated a gap between how prepared patients feel and how prepared they want to feel about lung transplant decisions. Knowledge gaps were identified related to survival benefit, improvements in health-related quality of life, and contraindications to lung transplant.
How Take on Transplant was developed
We developed this website with you in mind. We worked closely with people living with CF, including individuals who have undergone lung transplant and people who decided not to have a lung transplant. We interviewed more than 50 people with CF to better understand their journeys and what could have made their experiences better and transitions easier. This website was developed with the help of their insights and suggestions. We also interviewed caregivers for people with CF and incorporated information about support during the transition to transplant.
Content found in the site activities has been vetted by CF and lung transplant physicians as well as patients. The medical information includes recommendations supported by Cystic Fibrosis Foundation guidelines. The details you will find include the most up-to-date information available, which will provide you with tools to help in having informed discussions about lung transplant with your CF team.
Please note: Vertex Pharmaceuticals (the makers of “Trikafta”) did not provide funding for the creation of Take on Transplant and did not participate in any way in the development of this website.
About Us
Take on Transplant™ is sponsored by grants from the Cystic Fibrosis Foundation and the National Institutes of Health. Our research team is located at the University of Washington (in Seattle, WA) and includes CF and lung transplant physicians, researchers with experience in CF and lung transplant, and clinical informatics experts. Drs. Ramos and Kapnadak wrote and edited the medical information included in the tool. They also ensured the medical accuracy of patients’ and caregivers’ stories. Dr. Hobler is a PhD researcher who conducted interviews with patients and caregivers and worked with interview participants to create the CF Stories. Our research team has authored multiple scientific papers describing outcomes for people with advanced CF and those who undergo lung transplant.
Clinical Team
Dr. Kathleen Ramos
Dr. Ramos is an adult pulmonologist working in the University of Washington (UW) Adult Cystic Fibrosis Center and the UW Lung Transplant Program. She works in both the clinic and hospital settings to care for people with CF and people who undergo lung transplant. She has a Masters in epidemiology from the UW School of Public Health. Her research focuses on advanced CF lung disease and lung transplantation, with an emphasis on clinical outcomes. She served as co-Chair of the CF Foundation lung transplant referral guidelines committee and was the lead author of the guidelines document. She is currently the co-Chair of the committee to revise the International Society of Heart and Lung Transplantation consensus recommendations for the selection of lung transplant candidates. She has a special interest in improving access to lung transplant for people at a high risk of dying from CF, with a focus on empowering patients to understand lung transplant as a treatment option.
Dr. Siddhartha Kapnadak
Dr. Kapnadak is an adult pulmonologist whose clinical work is focused on caring for patients after lung transplantation, along with those with advanced lung disease nearing transplantation. He has a special interest in improving care and outcomes in advanced cystic fibrosis lung disease, including issues impacting transplant candidacy and the peri- and post-transplant period. He was lead author on the 2020 CF Foundation consensus guidelines for the care of individuals with advanced CF lung disease, and has served in various roles through the International Society for Heart and Lung Transplantation, and the American College of Chest Physicians.
Project Team
Dr. Kathleen Ramos
Dr. Siddhartha Kapnadak
Dr. Andrea L Hartzler
Lauren Bartlett
Dr. Mara R Hobler
Nick Reid
Dr. Chris Goss
Dr. William Lober
Dr. Donna Berry
Justin McReynolds
Amy Chen
Sierramatice Karras
In Memory of Mara R. Hobler, PhD
Dr. Mara Hobler (died August 2021) was an exceptional researcher and colleague who contributed significantly to the development of the “Take on Transplant” lung transplant decision support tool. She brought years of clinical research expertise and qualitative research methodology to the team. She conducted all of the interviews with the people whose stories about cystic fibrosis are presented in "Take on Transplant." She connected with people living with cystic fibrosis and their loved ones while discussing incredibly personal and sensitive subjects. Mara’s empathetic personality allowed her to guide and support people to open up about difficult topics, which aided in constructing answers to important research questions. She published numerous important manuscripts describing communication needs for people with cystic fibrosis. Her untimely death is mourned by all who knew her. We dedicate the "Take on Transplant" lung transplant decision support tool to her memory and let it serve as a reminder of her important impact in the cystic fibrosis research community.
