About the glossary

Why did we make the glossary?

We had the idea for a glossary in 2019 at the 7th meeting of the CF Round Table of Companies. We were discussing a new European rule that means pharmaceutical companies must publish summaries of clinical trial results in “lay” or plain language. That means that anyone aged 12 years or older should be able to understand the summary, even if they have never heard of the clinical trial or the condition.

We decided that a glossary would help companies and research teams write good clinical trial summaries that anyone can understand. We realised that the glossary could also help anyone interested in cystic fibrosis and clinical trials to understand the research. We also knew that the best way to create the glossary was to work with the CF community.

How did we build the glossary?

We started with a pilot project.

• We made a long list of terms and asked a group of people with cystic fibrosis to prioritise the top 10 terms to include in our pilot project.
• We wrote explanations for these terms and then asked for feedback from people with cystic fibrosis and their families, cystic fibrosis doctors, and teenagers and adults with no link to cystic fibrosis. We got feedback from 90 people! We also received feedback from members of the CF Round Table of Companies.
• We updated the explanations based on the feedback.
• We then asked for more feedback from a smaller group of people with cystic fibrosis and their families, cystic fibrosis doctors, and teenagers and adults with no link to cystic fibrosis (17 in total).
• We finalised the explanations based on the feedback.
  The pilot project helped us learn how to write good explanations. Armed with this knowledge, we went and wrote the other explanations.
  A huge thank you to the 107 people who gave us feedback during the pilot phase – your help was very important, and the glossary would not exist without you.

Will we add more terms?

Yes! Email us if there is a term you would like to us to explain.

How can I use this glossary?

Here are some examples of who could use the glossary and how.

• People with cystic fibrosis, their families and friends can learn more about clinical trials of cystic fibrosis treatments.
• Patient organisations can link to the glossary, or they can add it directly to their own website. They can even translate the glossary into their local language(s).
• Pharmaceutical companies and academic researchers can use the glossary to help them write informed consent forms, patient information leaflets and clinical trial summaries.
• Cystic fibrosis clinics can use the glossary to help people with cystic fibrosis learn more about taking part in clinical trials.

If you do use the glossary or its explanations, please acknowledge our work by adding one of the phrases below, or similar:

• This glossary was created by Cystic Fibrosis Europe and the European Cystic Fibrosis Society Clinical Trials Network. See the original glossary here: cfeurope.eu/what-we-do/glossary
• This explanation was written by Cystic Fibrosis Europe and the European Cystic Fibrosis Society Clinical Trials Network. See the original glossary here: cfeurope.eu/what-we-do/glossary
• This glossary was created by Cystic Fibrosis Europe and the European Cystic Fibrosis Society Clinical Trials Network. See the original glossary here: cfeurope.eu/what-we-do/glossary
• Adapted from a glossary created by Cystic Fibrosis Europe and the European Cystic Fibrosis Society Clinical Trials Network. See the original glossary here: cfeurope.eu/what-we-do/glossary

Who are we?

We work in the European Cystic Fibrosis Society Clinical Trials Network (ECFS-CTN), CF Europe and one of their member organisations, the CF Trust. We have expertise in working with the CF community, scientific and lay writing, clinical trials and research.

• Elise Lammertyn (Cystic Fibrosis Europe, Belgian Cystic Fibrosis Association)
• Hilde de Keyser (Cystic Fibrosis Europe)
• Jill Bonjean (Cystic Fibrosis Europe, Muster for Good)
• Jade Ashton (Freelance science writer, Cystic Fibrosis Trust)
• Lorna Allen & Candice King (Cystic Fibrosis Trust)
• Kate Hayes (European Cystic Fibrosis Society Clinical Trials Network, Queens University Belfast)
• Fiona Dunlevy (European Cystic Fibrosis Society Clinical Trials Network & Axcience Medical Writing & Science Communication)

Thanks also to Luci O’ Reilly (formerly Cystic Fibrosis Trust) and Emmanuelle Bardin (formerly Cystic Fibrosis Europe), who participated previously.

We thank the CF Round Table of Companies for their engagement with this project. We also thank Queens University Belfast, who kindly supported this project with an “Engaged Research Fund” grant of £5,000 and a “Personal and Public Involvement” grant of £600. This funding was used to pay for editorial support from Jade Ashton, and for graphic design by Ease Designers.