Opportunities to improve treatment and care for severe asthma in Europe

We are involved in a number of projects focusing on severe asthma, and would like to invite patients, parents and carers to get involved. Bringing together healthcare professionals, researchers and patients, these projects aim to improve treatment and care of people with severe asthma, and increase the level of research across Europe.

By getting involved, people affected by severe asthma will help to make sure the projects address the issues which matter to patients and will deliver results for patients now and in the future.

The current severe asthma projects are:

Developing international guidelines on the definition, evaluation and treatment of severe asthma

These guidelines will give healthcare professionals evidence-based guidance on the best way to diagnose, treat and manage severe asthma.

Increasing the number of children with severe asthma who participate in clinical trials

This project, which brings together doctors, patients and representatives from the pharmaceutical industry, aims to increase the number of treatments available for children with severe asthma. By linking up hospitals and research centres across Europe, this project will make it easier to do clinical trials and get treatments to children with severe asthma much more quickly.

Establishing a network of European asthma research centres

This project will create a collaborative, cross-border network of doctors, researchers and patients to tackle severe asthma. By establishing a database (patient registry) of people with severe asthma this project aims to increase the level of research, and deliver new treatments to patients faster. This is the first project of its kind with a patient chair, indicating the level of commitment to working in partnership with people with severe asthma.

Patient input

To support these projects, ELF would like to establish a patient advisory group (PAG), formed of people with severe asthma and parents/carers of children with severe asthma from across Europe.

PAG members can come from any European country and we aim to recruit a broad range of representatives from across Europe. The working language of the PAG will be English.

Members can nominate themselves to focus on or sit on the boards of specific projects.

What’s involved?

As a member of the severe asthma PAG you would get involved in one or more of the above projects, depending on your area of interest. You would be asked to comment on all aspects of the projects’ aims, design and delivery from the perspective of someone affected by severe asthma and will help to make sure the projects deliver the results needed for patients. The group will meet regularly by teleconference and also communicate by email. Some meetings will also take place face to face within Europe.

ELF would like to hear from you if you have:

• Experience of severe asthma, as a patient, parent or carer
• An interest in improving the treatment for severe asthma
• An interest in working with other patients and professionals from across Europe
• The ability to communicate in English (spoken and written)
• Access to a computer and the internet

Any costs for getting involved in the PAG, such as telephone calls, travel and accommodation costs will be covered, in line with our expenses policy. Please note that this is a voluntary role and we are unable to pay for your time.

How to get involved

If you are interested in getting involved or would like to find out more, please email Courtney Coleman, ELF patient involvement and engagement.

Please get in touch before Friday 7 July, 2017.