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Research changed my life

ResResearch Changed my life logoearch Changed my life: Launch of National Institute for Health Research Campaign to raise awareness of research

Research is an essential part of the NHS to help improve treatment and patient outcomes and it can make a real   difference to patient's lives. On the 28th November is the launch of a national campaign called "Research Changed My Life". The purpose of this campaign is to help patients to understand the positive effects that can result from getting involved in clinical research.

The campaign has been organised by the National Institute for Health Research (NIHR) Clinical Research Network, and our Trust will be helping to spearhead the campaign.

As part of this campaign, the NIHR have collected inspirational stories of people who have taken part in clinical studies. Experiences include health benefits, improved understanding of conditions, the ability to shape future treatments, and the capacity for research to help people take control of their lives in difficult situations.

Catherine Carpenter-Clawson, the NIHR Avon, Somerset & Wiltshire Cancer Research Network Manager has been featured by the NIHR in their campaign. Catherine suffered from Wilms tumour as a child, and her parents chose to enter her into a treatment trial at Great Ormond Street Hospital in London.  She now lives in Wales and works at UH Bristol.

We asked Catherine a few questions about the impact of taking part in research:

Q: What condition do/did you have?

A: Wilms tumour (kidney cancer as a child).

Q: Why did you choose to take part in a trial?

A: It was my parents' choice to enter me into a treatment trial in Great Ormond Street Hospital.  I have since taken part in long-term follow up and genetics trials which have been co-ordinated by Great Ormond Street Hospital.

Q: What was the trial you took part in?

A: The original trial was conducted in 1983 in Great Ormond Street to look at treatment of Wilms tumour.

Q: How long did the trial last?

A: The treatment trial was 18 months but I am part of a long term follow-up regime that means I am likely to be followed up for life!

Q: How has taking part in research impacted on your life? 

A: I do not have distinct memories of the study as I was 3 when I was diagnosed and treated.  However, being part of a clinical trial has profoundly changed my life.  As a young child I was aware I had been treated for cancer and as I grew up I started to ask questions about the treatment I received and became aware that I was treated as part of a clinical trial.  I decided early on that I wanted to work in cancer research 'when I grew up' and so studied sciences and then Pharmacology at Bristol University.  After graduating I spent several years working as a Research Manager in the private sector but in 2008 an opportunity arose to work as part of the National Cancer Research Network and I decided to move into a cancer research role within the NHS.  I now work as the Research Network Manager for the NIHR Cancer Research Network and am employed by UHBristol in their role as host for the Avon, Somerset & Wiltshire Cancer Research Network.  Being treated as part of a clinical trial not only offered me potential treatment benefits but has shaped my life in many ways both personally and professionally.  I am passionate about research and continuing to support improvements in cancer care by conducting good quality research.

To see Catherine and other patients across the country talking about their inspirational stories please follow this link: http://www.crncc.nihr.ac.uk/ppi/rcml/your+stories

If you have your own story to tell we would love to hear about it. Please contact us at Research@UHBristol.nhs.uk (or 0117 342 0233) and link into the NIHR campaign via email, phone, facebook or twitter: http://www.crncc.nihr.ac.uk/ppi/rcml/get-involved.

We also have more stories from our patients at UH Bristol and their experiences of taking part in research so please do visit our Case Studies webpage