Research

Research trials we are currently recruiting to and other research

Research opportunities can be discovered via the CTAP Trials Tracker. Here are a few of the studies we are recruiting to:

The MoreLife with CF Health Care Professionals Weight Management Experience Study

Do you work with adults living with CF?

Are you a registered dietitian, physiotherapist, clinical nurse specialist, doctor or psychologist ?

We would like to invite you to take part in an online focus group to discuss your experience of managing adults with CF who are living with overweight or obesity and are on CFTR modulator therapy.
Your experiences and views will  inform the design of a CF specific weight management programme

How do you take part?

Download a participant information leaflet here

Complete our online screening questionnaire and consent form here

Once you completed the consent form, you will be contacted to arranage a date to take part in a focus group interview

For more information email - Jo Barrett  Specialist CF Dietitian, NIHR Doctoral Fellow  jbb902@student.bham.ac.uk

The MoreLife with CF Study - Find out more about our research programme that aims to co-design with people living with CF, a diet physical activity programme for people with CF on CFTR modulator therapy.

NIHR Bioresources: Rare Diseases
The BioResource provides a unique and ground-breaking opportunity to join up existing clinical data registries, providing information on the characteristics of CF, with genetic data. Ultimately, this will drive the development of more targeted CF therapies and large-scale clinical trials.After signing a consent form, participants will be asked to provide a small blood sample and share their contact details with the research team. This information will be stored and used to invite them to future research studies investigating CF and potential treatments.

CF Storm

CF STORM is a study which aims to find out if stopping certain daily nebulisers (DNase, hypertonic saline or both) is safe for people with CF taking Kaftrio. As part of the study, individuals are randomly allocated to either stop or continue their DNase/hypertonic saline for 52 weeks and will also be asked to complete some questionnaires during this time. There is no requirement for additional clinic appointments or blood samples.

For more information on CF STORM visit the website.

If you are interested in participating in either of these studies or have any questions about clinical research, please get in touch with our CTAP coordinator Aoife Neal via email: Aoife.Neal@uhb.nhs.uk.

Patient and Public Involvement Opportunities

MoreLife with CF Lead Partners

Jane and Carly are Lead Partners for the More Life with CF Research Study
As lead partners, Jane and Carly have lived experience of cystic fibrosis. They are working closely with the lead researcher (Jo Barrett) in planning and co-ordinating all patient and public involvement activities for this research study. This includes planning our patient advisory group meetings, CF community involvement, and leading our patient advisory group. The More Life with CF Patient Advisory Group make shared decisions with the research team and provide feedback on how the research is carried out and communicated to the CF community.

Read about Jane and Carly's journey living with cystic fibrosis and why they decided to become More Life with CF Lead Partners

If you have cystic fibrosis or care for someone who has cystic fibrosis and would like to join our patient advisory group, please email Joanne.barrett2@nhs.net  for more information.