Environmental scan of cystic fibrosis research worldwide

Abstract

Background: Cystic fibrosis (CF) is a rare fatal genetic disease, affecting 70,000 to 100,000 people worldwide [1]. Numerous countries have specific charitable organizations dedicated to CF, with many funding research to find a cure or effective control for the disease. Cystic Fibrosis Canada, the largest charity in Canada dedicated to funding research and care in CF, conducted an environmental scan of these organizations to learn and better understand their research goals and funding process.

Methods: A set of questions was sent to 25 CF charitable organizations around the world by email. Responses were consolidated to identify common practices and innovative approaches.

Results: Among respondents, there were variations in the amount of funds invested in research annually and the number of studies supported. Common themes identified included practicing an open call for research applications, evaluating applications using a peer review process, and placing an increased emphasis on patient engagement. Innovative approaches included funding one larger project; funding a series of sub-projects on a common theme; partially funding a research project; and, indefinitely funding part of a researcher's salary.

Conclusions: Among CF charitable organizations, there are numerous approaches to research funding. Both similarities and differences were noted between these organizations, all of which share the common goal of working towards improving quality of life and survival for people with CF.

Keywords: Charitable organizations; Cystic fibrosis; Environmental scan; Rare disease; Research funding.