Education program for lung transplant discussions in cystic fibrosis

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This study aims to improve awareness and discussions around lung transplantation for individuals with cystic fibrosis (CF) and their caregivers. It focuses on addressing the barriers that prevent patients from being referred for lung transplant consideration, particularly in communities that are disproportionately impacted. The intervention involves an investigator-designed education website that facilitates ongoing discussions about lung transplant options and supports patients in making informed decisions. By enhancing social support and deliberation, the study seeks to reduce mortality rates among CF patients who may benefit from lung transplantation.

Why it matters

Who can join: the full rules

Inclusion Criteria:

* Identified as a caregiver or loved one of an individual with CF enrolled in the Lung Transplant READY CF 2 parent RCT, or
* An individual with CF enrolled in the Lung Transplant READY CF 2 parent RCT

Exclusion Criteria:

* People who are unable to provide informed consent
* Unable to read or understand English or Spanish to complete surveys or access the website (currently only available in English and Spanish)

Where it's running

• University of Washington Medical Center - Montlake
  Seattle, Washington, United States Recruiting

Study contacts

• Principal investigator: Kathleen Ramos, MD, MS — University of Washington
• Study coordinator: Lauren Bartlett, BS, CCRC
• Email: lrejman@uw.edu
• Phone: 503-583-2869

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.