The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and health care providers

Rowbotham, Nicola J.; Smith, Sherie; Leighton, Paul; Rayner, Oliver C.; Gathercole, K.; Elliott, Z.C.; Nash, Edward F.; Daniels, T.; Duff, A.J.A.; Collins, S.; Chandran, S.; Peaple, U.; Hurley, M.N.; Brownlee, K.; Smyth, Alan R.

doi:10.1136/thoraxjnl-2017-210473

A refresh of the top 10 research priorities in cystic fibrosis (2023)
Journal Article

In 2018 we published the James Lind Alliance (JLA) top 10 priorities for clinical research in cystic fibrosis (CF), chosen jointly by the patient and clinical communities. These priorities have led to new research funding. To establish whether priori... Read More about A refresh of the top 10 research priorities in cystic fibrosis.

A grumbling concern: an international survey of gastrointestinal symptoms in cystic fibrosis in the modulator era [version 1; peer review: awaiting peer review] (2023)
Journal Article

Background: Gastrointestinal symptoms in cystic fibrosis (CF) are common and intrusive to daily life. Relieving gastrointestinal symptoms was identified as an important research priority and previously explored in an international survey in 2018. How... Read More about A grumbling concern: an international survey of gastrointestinal symptoms in cystic fibrosis in the modulator era [version 1; peer review: awaiting peer review].

Industry influence in healthcare harms patients: myth or maxim? (2022)
Journal Article

Healthcare is a major global industry accounting for a significant proportion of government spending. Drug and medical device manufacturers are publicly traded companies with a responsibility to their shareholders to maximise profits by increasing sa... Read More about Industry influence in healthcare harms patients: myth or maxim?.

Airway clearance and exercise for people with cystic fibrosis: Balancing longevity with life (2021)
Journal Article

Airway clearance has been an integral part of cystic fibrosis (CF) care for almost as long as CF has been identified as a condition. From diagnosis as a neonate through to end-of-life care, airway clearance is an everyday aspect of life, adding a con... Read More about Airway clearance and exercise for people with cystic fibrosis: Balancing longevity with life.

Exploring the challenges of accessing medication for patients with cystic fibrosis (2021)
Journal Article

Reducing treatment burden in cystic fibrosis (CF) is the top research priority for patients and clinicians. Difficulty accessing medication is one aspect of treatment burden. We investigated this with an online survey available globally for patients... Read More about Exploring the challenges of accessing medication for patients with cystic fibrosis.

How can we relieve gastrointestinal symptoms in people with cystic fibrosis? An international qualitative survey (2020)
Journal Article

Introduction Relieving gastrointestinal (GI) symptoms was identified as a ‘top ten’ priority by our James Lind Alliance Priority Setting Partnership in cystic fibrosis (CF). We conducted an online survey to find out more about the effect of GI sympto... Read More about How can we relieve gastrointestinal symptoms in people with cystic fibrosis? An international qualitative survey.

What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment? (2020)
Journal Article

Introduction: “What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?” was identified as one of the James Lind Alliance Priority Setting Partnership’s top 10 research q... Read More about What effective ways of motivation, support and technologies help people with cystic fibrosis improve and sustain adherence to treatment?.

Can exercise replace airway clearance techniques in cystic fibrosis? A survey of patients and healthcare professionals (2019)
Journal Article

Airway clearance techniques (ACTs) are recommended in cystic fibrosis (CF) to prevent accumulation of secretions and lung infection. “Can exercise replace chest physiotherapy for people with CF?” is one of the CF community's top 10 research questions... Read More about Can exercise replace airway clearance techniques in cystic fibrosis? A survey of patients and healthcare professionals.

Do current clinical trials in cystic fibrosis match the priorities of patients and clinicans? A systematic review (2019)
Journal Article

There are many uncertainties regarding Cystic Fibrosis (CF) treatment. Recently, the first James Lind Alliance (JLA) Priority Setting Partnership (PSP) in CF was completed, bringing clinicians, patients and carers together to identify the Top 10 rese... Read More about Do current clinical trials in cystic fibrosis match the priorities of patients and clinicans? A systematic review.

Infection prevention and control in cystic fibrosis: a systematic review of interventions (2019)
Journal Article

Introduction: Cystic fibrosis is a life-limiting genetic condition characterized by recurrent pulmonary infection. Acquisition of infection can occur from environmental reservoirs, person-to-person transmission and from the healthcare environment. Pr... Read More about Infection prevention and control in cystic fibrosis: a systematic review of interventions.

The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and health care providers (2017)
Journal Article

There remain many treatment uncertainties in cystic fibrosis (CF). With limited resources, research should focus on questions which are most important to the CF community. We conducted a James Lind Alliance Priority Setting Partnership in CF. Researc... Read More about The top 10 research priorities in cystic fibrosis developed by a partnership between people with CF and health care providers.

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