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CFHealthHub Data Observatory: A Quality Improvement project and Trials within Cohort platform for Cystic Fibrosis

The Data Observatory project aims to build on the work of the CFHealthHub platform, using the adherence data collected to help improve the care that people with CF (pwCF) receive at local and national level.

The project aims to do this in two ways:

  • Adherence data collected from specially-adapted nebulisers, uploaded to CFHealthHub, will be shared with CF healthcare professionals – this information can then be used, through quality improvement work, to help shape the care delivered in CF centres in supporting pwCF to self-manage their treatments successfully;
  • Data available from pwCF on CFHealthHub could be used to help other research projects, either using the information available directly or to identify people to take part in other studies.

We are looking to recruit up to 6,000 adults with CF in the UK to join the CFHealthHub platform over the next 4 years. In 2017, we will look to recruit pwCF from CF centres in Sheffield, Nottingham and Southampton & Poole.

More detailed information on the study can be found in the protocol which is available to download via the ‘Downloads’ box on the right. We are also working with the Sheffield Microsystem Coaching Academy on the quality improvement aspects of the project – more information about their work can be found here.

Recruitment status

Sheffield is currently open for recruitment.

Study staff:

Name Role Organisation Contact
Dr Martin Wildman Chief Investigator Sheffield Teaching Hospitals NHS Foundation Trust martin.wildman@sth.nhs.uk
Dr Daniel Hind CTRU Assistant Director University of Sheffield d.hind@sheffield.ac.uk
Kimberley Horspool Study Manager University of Sheffield k.horspool@sheffield.ac.uk
Carla Girling Research Assistant University of Sheffield c.girling@sheffield.ac.uk
Dr Anne Scott Research Assistant University of Sheffield anne.scott@sheffield.ac.uk
Heather Dakin Trial Support Officer University of Sheffield h.dakin@sheffield.ac.uk
Dr Pauline Whelan m-Health Applications Manager University of Manchester pauline.whelan@manchester.ac.uk
Michelle Lowther Clinical Coordinator Cystic Fibrosis Sheffield Teaching Hospitals NHS Foundation Trust michelle.lowther@sth.nhs.uk

Participating sites:

Site Name Role Contact
Sheffield Teaching Hospitals NHS Foundation Trust

Dr Martin Wildman

Michelle Lowther

Principal Investigator

Clinical Coordinator Cystic Fibrosis

martin.wildman@sth.nhs.uk

michelle.lowther@sth.nhs.uk

Nottingham University Hospitals NHS Trust Dr Jane Dewar Principal Investigator Jane.Dewar@nuh.nhs.uk
University Hospital Southampton NHS Foundation Trust Dr Julia Nightingale Principal Investigator julia.nightingale@uhs.nhs.uk