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Cystic Fibrosis Trust

UKCFC 2017: day two

'Clinical trials and increasing access for people with cystic fibrosis'

Thursday 7 September 2017

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9.00 Registration and networking
10.00 Welcome to day two

David Ramsden, Chief Executive of the Cystic Fibrosis Trust

Session One

10.05 Clinical trials: Where are we now?

Chairman: Dr Damian Downey, Consultant Respiratory Physician

Queens University Belfast

Introductory chair scene setting followed by:

10.15 What and why: clinical trials

Keynote: Future CF therapies are dependent on delivery of clinical trials.

George Retsch-Bogart

University of North Carolina & CFF Trials Development Network

  • The role of the TDN in coordinating CF clinical trials in the USA.
  • The increased number of trials in the next year.
  • We need to find better outcome measures for trials that reflect patient need.
  • Some facts behind clinical trials.
  • What is involved and why get involved?
11.00 Clinical Trials Accelerator Platform

Rebecca Brendell, Head of the Clinical Trials Accelerator Platform at the Cystic Fibrosis Trust

11.15 Coffee and networking (exhibition area)

Session Two

11.30 Clinical trials: what's coming down the line?

Forum: carer and people with cystic fibrosis perspectives:

Zoe Elliott and Katie Gathercole

  • What is the experience of people who have taken part in clinical trials?
12.00 Clinical trial challenges in the age of personalised medicine: industry perspective

David Geller, Medical Director CF


  • What are the shared goals of industry sponsors with the CF community, and how may goals differ?
  • What would make the performance of clinical trials easier/faster/better in the eyes of industry sponsors?
  • What clinical trial design options exist to accelerate the process (pros and cons)?
  • Thoughts on breaking the bottleneck.
12.30 The challenge of personalised/precision medicine in design of clinical trials
  • How can we move away from trials designed for large population outcome measures to ones where the numbers are small?
  • Adaptive design principles
  • Is this an opportunity to rethink clinical trials and identify ways of improving results and lowering costs?
13.00 Conference lunch (exhibition area)

Session Three

14.00 The Cystic Fibrosis Trust: 'a year in the life'

Meet the Trust: updates on the UK CF Registry, research, fundraising, policy and volunteering.

Session Four - Afternoon workshops

15.00 Multi-disciplinary interactive sessions

A. Clinical Psychology:

'The Science of Psychology and the Thriving Child and Adolescent'

Dr James Lemon, Consultant Clinical Psychologist, NHS

B. Nutrition:

Nutritional Assessment - practical ways of monitoring nutritional status in cystic fibrosis

Darren Sills, Lead Adult Cystic Fibrosis Dietitian, Wolfson Adult CF Unit, Nottingham University Hospital Trust

C. Physiotherapy:

Clinical Exercise Testing and Prescription

Professor Craig Williams, Director: Children's Health and Exercise Research Centre, University of Exeter

D. Pharmacy:

'Access to new medicines - Pipelines to Patients'

Patrick Wilson, Assistant Head of Pharmacy: Clinical and Operational Services, Pharmacy Department, Nottingham Hospitals  

E. CF Centre Directors Meeting (closed)

16.30 Close of conference

Research we're funding

The Trust is committed to funding and supporting cutting-edge research to find new and better treatments for cystic fibrosis. Take a look at some of that work and the progress that is being made.

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What is cystic fibrosis?

Find out more about cystic fibrosis, its diagnosis and how it is treated, as well as useful links to our publications and other organisations who can help.

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