Recruitment {15}
PEx
CYSTIC FIBROSIS
A broad patient enrolment approach is taken with the aim of enrolling all willing and eligible people with CF. Potential screening avenues to identify eligible patients include:During clinic appointments —potential participants may be directly approached during routine clinic appointments conducted by participating sites. Trained research staff will, after consulting with the clinical team, approach patients (or their parents) to discuss participation in the PEx cohortAdvertising material approved by the relevant Human Research Ethics Committee (HREC), including posters, brochures, and social media, may be used to promote and raise awareness of the project; these will appear in participating hospitals on notice boards or electronic notice boards. Advertisements may also be displayed in various community locations to assist enrolmentLetters—a HREC approved letter for distribution by participating sites to potential participants is supplied to all participating sitesBEAT CF website—a publicly accessible website where participants and their families can access the Participant Information Booklet, read updates about BEAT CF, and learn about the rationale and the team undertaking the research. This includes a section where interested people can receive further information or register their interest with contact details if they want to participateSocial media—the approved advertisements and other example promotional content is distributed through various social media avenues of the sponsor and supporting organizations, including Cystic Fibrosis Australia and its state branchesResearch staff at participating sites are trained on project requirements prior to screening and enrolment of participants to ensure eligible participants are identified, educated about, and invited to participate in the PEx cohort. Enrolment and screening procedures occur according to the approved protocol and in line with the principles of Good Clinical Practice (GCP). Documented instructions for operational matters are provided to participating sites detailing enrolment, screening, and data collection procedures. Reasons for non-eligibility are recorded in a screening log.