Get involved in a new network for primary ciliary dyskinesia and help improve diagnosis and care

The European Respiratory Society is funding a new project to improve diagnosis and care for primary ciliary dyskinesia (PCD) and ELF is looking for people with experience of PCD to get involved.

PCD is a rare genetic chronic condition that causes mucus build up, leading to swelling and infection in the airways and ears.

The project is a clinical research collaboration (CRC) called BEAT-PCD (Better Experimental Approaches to Treat – PCD) and is a network of people with an interest in PCD. The aim of this CRC is to advance research into PCD to improve diagnosis and patient care.

BEAT-PCD is looking for people with PCD, suspected PCD or people who have family members with PCD to join and advise this new European initiative.

The aims of BEAT-PCD

• To encourage clinical trials that evaluate treatments and improve the way those trials are designed.
• To analyse existing data to answer questions on PCD disease course and factors that influence it, taking into account research priorities identified by both experts and patients.
• To facilitate the collection of data in clinical routine care to improve research and use all routinely collected data.
• To promote the development of patient care standards to be followed in every centre.
• To create a website of all the different gene mutations involved (there are more than 1,000) and provide advice on diagnosis, exchanging expertise between countries so that PCD can be diagnosed even in places where diagnostic facilities are not yet developed.
• To create resources for physicians, patients and the public to learn about PCD and increase awareness.
• To work closely with other collaborative networks in the field of PCD and other respiratory diseases internationally, building on the advances and experiences of recent years.

What would you be asked to do?

BEAT-PCD wishes to involve patients in all their research activities and encourage communication between patient organisations from different countries. Examples of things patient representatives will be asked to do include:

• giving advice on the design of research studies;
• giving an opinion on priority areas of research;
• supporting the development of surveys and information for patients; and
• contributing to material produced to ensure it makes sense to patients and the public.

We want to encourage people from all across Europe to get involved. If you are interested in joining with other patients and healthcare professionals in the BEAT-PCD network, please contact Jeanette Boyd at jeanette.boyd@europeanlung.org

COVID-19 infections in people with PCD

BEAT-PCD has launched a research project to learn more about the impact of COVID-19 in people with PCD. It involves PCD patients with COVID-19 completing a series of questionnaires to monitor the progression of symptoms.

Find out more and register for the survey.