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Cystic Fibrosis Trust

Trials Tracker

Welcome to the Trials Tracker, bringing together all the cystic fibrosis (CF) trials currently recruiting in the UK so that you can find clinical trials you can take part in both in your region and further afield. The Trials Tracker is a new resource that we’ll be developing over time based on your feedback. If you’ve used the Trials Tracker and want to share your opinion, please complete our online poll or get in touch at clinicaltrials@cysticfibrosis.org.uk.

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Clinical trials

6-10 of 25 results for all trials

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Trial status

Inclusion age

FEV1

Study design

Location

Mutation

Therapeutic category

A Study of the Dosing, Efficacy, and Safety of Oral Cysteamine in Adult Patients With Cystic Fibrosis Exacerbations

This study investigates the use of cysteamine in the treatment of adults with Cystic Fibrosis who are experiencing an exacerbation of CF-associated lung disease. There are six different potential dosing regimens, including one that is placebo.

Phase II
  • Age

    18+

  • Length of participation

    3 weeks

  • Trial status

    Open to recruitment

  • Therapeutic category

    Mucociliary Clearance

Remote monitoring & gaming technology for improving outcomes in children with cystic fibrosis

Remote monitoring and gaming technology for improving physiotherapy prescription, adherence and prediction of clinical outcomes in children with cystic fibrosis. Airway clearance, physical activity and exercise can mitigate the progression of CF lung disease, but routine physiotherapy treatments are burdensome and adherence is low. Traditional research has failed to produce credible evidence to guide practice, partly because ‘blinding’ isn’t possible and patient preference can confound results. Following our involvement with the ‘Big Life Fix’ television series https://youtu.be/d6A8R146JWU (BBC2,2016) we have worked with engineers and designers to develop electronically chipped airway clearance devices and wearable activity trackers to facilitate automatic data transmission to clinicians and researchers caring for children with CF. Industry partners (Microsoft) and UCL computer science experts are helping us develop computer games driven by breathing through an airway clearance device (to enhance treatment enjoyment and adherence). The project will use this technology for passive remote capture and transmission of daily longitudinal data during airway clearance, physical activity and exercise to assess impact on clinical outcomes. Innovative big data analysis methods will be used to find out whether: Children with CF should do regular ACTs or exercise, and what the minimum effective dose is physical activity levels have an impact on clinical outcomes airway clearance or exercise is more effective in different children (and how to choose) some airway clearance techniques are better than others airway clearance gaming helps children do treatments more regularly, and whether better adherence improves health alternative to traditional research methods and help identify sensitive composite outcome measures for children with mild signs and symptoms.

Study
  • Length of participation

    14 months

  • Trial status

    Project in Setup

  • Therapeutic category

    Behavioral

How PWCF interpret and respond to the PAM-13

Cystic Fibrosis affects 10,000 people in the United Kingdom (UK). People with Cystic Fibrosis (PWCF) typically die from lung damage at a median age of 28 years. Randomised controlled trials show that preventative medications reduce exacerbations and/or preserve lung function. However adherence is poor. We have been funded to undertake a five year programme to develop and evaluate a new approach to helping PWCF adhere to their nebulisers. We have undertaken a number of studies as part of this full programme and all have received a favourable opinion from an NHS REC. This study focuses on the usage of the PAM-13 which is being used as one of the secondary outcome measures to evaluate the intervention we developed. While we would expect that people with higher patient activation scores or levels would have higher levels of adherence no such pattern could be discerned from an initial analysis of the pilot trial baseline data (WP 3.1, Arden et al., unpublished). This has led to the question of how patients with Cystic Fibrosis in the UK interpret and respond to the PAM-13. Given the limited existing evidence of the effectiveness of the PAM-13 in UK patients, especially those with multiple co-morbidities, it is for the ACtiF programme, as well as the usage of the PAM-13 across the UK in a range of contexts that we understand how people are interpreting and responding to the items of the PAM-13. This study therefore aims to use a 'think-aloud' methodology to investigate how people with CF, and with other co-morbidities, understand and answer the PAM-13.

Not Applicable
  • Age

    18+

  • Length of participation

    1 day

  • Trial status

    Open to recruitment

  • Therapeutic category

    Behavioral

Experiences of Living with Cystic Fibrosis; The impact on children, young people, adults and their families

Through interviewing both the patient with CF and their families, this study hopes to establish a clearer picture of the effect the condition can have on the individual themselves and on their immediate family, in various aspects of their lives. From this, we hope to understand the key challenges facing these populations to help tailor the development of services.

  • Length of participation

    1 day

  • Trial status

    Open

  • Therapeutic category

    Behavioral

CFHealthHub Data Observatory

Cystic Fibrosis (CF) affects 10000 people in the UK. The lungs of people with CF (PWCF) are prone to infections and require daily medication to stay healthy. Average adherence to medication has shown to be only 36%. Poor adherence is associated with poor clinical outcomes including distressing unscheduled hospitalisations. Previous research has been undertaken to design a website (CFHealthhub) which records personal adherence data using chipped nebulisers and understand whether this can build successful treatment habits. In the current project we will develop CFHealthHub as a data observatory which will record adherence data and other indicators of health and patient care held in patient notes. The purpose of this is two- fold; to support local and national Quality Improvement (QI) projects aiming to improve an individual’s adherence to treatment and the quality of care delivered by the CF centre. Secondly, collecting adherence data from a large number of PWCF may support future research studies whereby CFHealthHub is used as a source of participants and data. We aim to recruit PWCF who use chipped nebulisers from 4 CF centres across in England. PWCF will be consented to 1) share their identifiable data with their local CF team 2) share data, from which they cannot be identified, with all CF centres in the study 3) share data, from which they cannot be identified, in future research studies which result in no changes to their care and 4) share data to be included for selection to future studies which may result in changes to care, such as testing new treatments. Consent in any combination can be provided and withdrawn at any time. Participants who consent to 'selection' for future studies will also be provided with information specific to the new study and the opportunity to decline participation, if selected from the data observatory.

Not Applicable
  • Length of participation

    Up to 6 years

  • Trial status

    Open to recruitment

  • Therapeutic category

    Behavioral

6-10 of 25 results for all trials