Abstract

Cystic Fibrosis (CF) is one of the most common genetic conditions in the UK, affecting approximately one in 2500 people. Patients with CF cannot meet up in person due to the risk of infection; therefore their opportunities to discuss scientific research related to their condition are limited. Gene therapy is often heralded as a potential future treatment for CF and first phase clinical trials are underway in the UK. Despite the frequent news headlines reporting continuing progress, the consistent and effective future use of gene therapy remains only a possibility.

Looking Forward brings young CF patients, clinicians, artists, scientists and educationalists together to develop an educational arts package exploring CF and gene therapy. Young CF patients are brought together via web-based technologies such as social networking websites and videoconferencing. Creative and novel approaches are used to explore the science behind gene therapy and the personal, social and ethical issues associated with this field of research. The resulting resource will be disseminated to a wider audience, including CF patients and their families, school pupils, teachers and health professionals.

This project is a unique collaboration that puts young people with CF at the centre of planning an educational arts package to ensure that the resource created is valuable and meaningful.

.

Background

CF affects approximately one in 2500 people with an estimated 1 in 25 people of Northern European origin having one faulty copy of the CF gene.

In 1989, scientists identified the gene responsible for causing CF, leading to an optimism amongst patients and families that a 'cure' would soon be found. Twenty years on, over 1,600 mutations causing CF have been identified, common mutations are routinely screened for in newborn babies and treatment for patients has significantly improved.

Following success stories using gene therapy for conditions such as the eye disorder, Leber's congenital amaurosis, UK scientists and clinicians are currently undertaking clinical trials assessing gene therapy for CF. The eyes of the international CF community are upon them.

CF patients have lived with twenty years of the promise of gene therapy and clinical trials for gene therapy have had mixed results. Ethical issues surround the therapy and sadly one patient in the USA died as a result of the mechanism by which the gene was delivered in a gene therapy trial. Locally, a team in Manchester conducted a CF and gene therapy clinical trial in the 1990s, involving our clinical adviser, Dr Kevin Southern.

Audiences

The educational arts package will be relevant and valuable for the following audiences:

1. Cystic Fibrosis patients, their families and friends.

2. Health professionals and scientists, particularly CF specialists, geneticists and genetic counsellors.

3. Science teachers and secondary school students.This audience will benefit from an engaging resource exploring CF and gene therapy which form part of both GCSE Science and A-level Biology in England and Wales.

Objectives

Looking Forward has three objectives:

Objective 1: To bring together young people with CF, artists, scientists, clinicians and educationalists to discuss CF and gene therapy.

Objective 2: To work with this group in a participatory, creative and novel way to develop an educational arts package exploring CF and gene therapy.

Objective 3: To disseminate the educational arts package as a tool to educate and stimulate discussion amongst wider audiences, including CF patients and their families, other young people, teachers, health professionals and scientists.

Developing arts education packageAppropriate artists will join the project to work one-to-one with all participants, and to use the virtual network to ensure formative input from all participants. The only limitation on the output is that the art form chosen must be disseminated electronically.

Virtual launch eventLooking Forward will be launched online, through virtual reality software such as Second Life. By using this approach, all participants can share in the success of the project. We also aim to invite an international audience from the CF patient and scientific communities to the launch event. Our sister project ‘Transitions’ run by LimeArt through BBC Children in Need grant will be launched at the same time as Looking Forward.

DisseminationWe will work with our project partners and wider CF communities to disseminate the package to CF patients and their families, health professionals and to schools.

Project Overview

Recruiting TeenagersLooking Forward will involve 8-10 teenagers from across the North West. Participants will be recruited through links with the CF Trust and regional cystic fibrosis hospital services.

Initial meetings with participantsThe Project Manager will meet with each of the participants in order to understand the teenagers’ experience with CF and their knowledge about gene therapy. They will try to identify any common misconceptions amongst the group, and to begin to understand issues, thoughts, opinions and feelings which could be expressed through the arts package. The meetings will also allow the team to scope for the online communication tool most favoured by the teenagers.

Establishing Virtual NetworkAs participants cannot meet face-to-face, a virtual network will exist amongst all members of the project through which to conduct all aspects of the project.

Looking Forward: Involving young people with Cystic Fibrosis (CF) in developing an educational arts package exploring CF and gene therapyHolmes LE1,2, Winters L1,2, Southern KW3, Chapman B4, Morton L5, Kitchen H4, Haig M4, Wiltshire K4, Palm ME1,2, Smith A6, Dack K1,2, Starling I1,2

1 Manchester Academic Health Science Centre, The University of Manchester, Manchester, UK2 Nowgen – A Centre for Genetics in Healthcare, Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK3 School of Reproductive and Developmental Medicine, The University of Liverpool, UK4 LimeArt, Central Manchester University Hospitals NHS Foundation Trust, Manchester, UK5 Cystic Fibrosis Trust6 Science Learning Centre North West

NIHR Manchester Biomedical Research Centre

Project Team

The project brings together a multi-disciplinary team of experts to work with the project participants in creating the educational arts package:

Kate Dack – Project Lead (Nowgen)Laura Winters – Project Manager (Nowgen)Dr Leah Holmes – Project Advisor (Nowgen)Dr Bella Starling – Public Engagement Advisor (Nowgen)Dr Marisha Palm – Project Evaluator (Nowgen)Dr Kevin Southern – Clinical Advisor (University of Liverpool)Lynsey Morton – Expert Patient (CF Trust)Brian Chapman – Arts advisor (LimeArt)Helen Kitchen - Arts advisor (LimeArt)Debbie Leyland – Education adviser (Science Learning Centre)Rita Smith - Education adviser (Science Learning Centre)

We also hope to work with the UK CF Gene Therapy Consortium

Evaluation

The evaluation will be both formative and summative using appropriate qualitative and quantative approaches. The nature of the project requires constant reflection as to what will work best to deliver the objectives of Looking Forward. A final report of Looking Forward will focus on:

1. Evaluation of attitudes and understanding of gene therapy before and after the project.

2. Evaluation of the development of the educational arts package – successes and challenges of the process.

3. Evaluation of the educational arts package as a tool to educate and stimulate discussion.

Acknowledgements

We acknowledge the Wellcome Trust for funding and support and thank the project team for their advice and guidance.

Artists will work with the teenage participants to produce an educational arts resource.

As patients with CF cannot meet up in person, a virtual network will exist amongst all members of the project.

Cystic Fibrosis is one of the most common genetic conditions in the UK and gene therapy is often heralded as a potential future treatment for this condition.