CF Health Hub Data Observatory 27th July 2017

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 and the ACTIF Programme Grant led by a Sheffield research team (Chief Investigators Dr Martin Wildman and Prof Alicia O’Cathain). The technology being developed collects data from people with cystic fibrosis (PWCF) to help improve the care that they 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.

The goal is to recruit up to 6,000 adults with CF in the UK to join the CFHealthHub platform over the next 4 years. Further information can be found at: