Specialised Commissioning Alert: cystic fibrosis

Showing posts with label cystic fibrosis. Show all posts

9 November 2020

COVID-19 rapid guideline: haematopoietic stem cell transplantation (NG164) 1 April 2020 Updated 10 February 2021
COVID-19 rapid guideline: delivery of systemic anticancer treatments (NG161) 20 March 2020 Updated 12 February 2021
COVID-19 rapid guideline: dialysis service delivery (NG160) updated 11 September 2020
COVID-19 rapid guideline: critical care in adults (NG159) updated: 12 February 2021
COVID 19 rapid guideline: renal transplantation (NG178) 19 June 2020 updated 19 August 2020
COVID-19 rapid guideline: arranging planned care in hospitals and diagnostic services
NICE guideline [NG179] 27 July 2020
- The purpose of this guideline is to help healthcare professionals deliver efficient planned care while minimising the risk of COVID-19 in the context of increasing or decreasing local prevalence. It also aims to help patients make decisions about their planned care. It is for adults, young people and children in hospitals and diagnostic settings.
COVID-19 rapid guideline: delivery of radiotherapy (NG162) 28 March 2020 updated 12 february 2021
COVID-19 rapid guideline: cystic fibrosis (NG170) 09 April 2020 updated 7 October 2020
COVID-19 rapid guideline: interstitial lung disease (NG177) 15 May 2020

This Innovation briefing summarises the evidence around CFHealthHub, a digital platform to help adults with cystic fibrosis (CF) manage their condition and monitor their medicine use. It allows remote access from the patients home to monitor medicines adherence.

Thousands of patients with cystic fibrosis and dozens recovering from coronavirus are being given devices and apps so that medics can monitor their condition remotely, as part of the NHS drive to give more people connected, supported, personalised care in their own homes.

A debate pack has been prepared ahead of the debate to be held in Westminster Hall at 4.30pm on 10 June 2019 on access to Orkambi and other drugs for people with cystic fibrosis.

A review of the the evidence from six Cochrane Reviews about the effect of airway clearance techniques in people with cystic fibrosis.
The overview found moderate evidence that PEP therapy and vibrating (oscillating) devices have a similar effect on lung function (forced expiratory volume in one second (FEV1) after six months of treatment.
It was not possible to draw definitive conclusions for all other comparisons in terms of FEV1 because the quality of evidence is currently lacking. Likewise, it was not possible to draw any definitive conclusions for other outcome measures such as individual preference and quality of life. Harms, such as acid reflux, collapsed lungs, coughing up blood, or decreased oxygen, were rarely mentioned in the original trials. There is a lack of evidence to determine if any particular airway clearance therapy is riskier than the other therapies.

CLIMB-CF is a study, funded by the CF Trust and run from Imperial College London, exploring whether it is possible to monitor children and young people with Cystic Fibrosis at home using an app and some Bluetooth equipment.(https://www.cysticfibrosis.org.uk/the-work-we-do/clinical-care/smartcarecf/climb-cf).
The app is currently on trial in the UK and Canada.

Alan Turing Institute

New research published in Scientific Reports (see below), demonstrates that machine learning methods can predict with a 35% improvement in accuracy whether a cystic fibrosis (CF) patient should be referred for a lung transplant, in comparison to existing statistical methods. It is the first machine learning study to make use of a dataset representing 99% of CF patients living in the UK, the CF Registry.
The research,has been generated through a partnership between The Alan Turing Institute and the Cystic Fibrosis Trust.

Reference: Prognostication and Risk Factors for Cystic Fibrosis via Automated Machine Learning Ahmed M. Alaa & Mihaela van der Schaar .
Scientific Reports vol8, Article number: 11242, 26 July 2018