Get involved with a project on central sleep apnoea in children

We need patients and parents to input into the development of the first European Respiratory Society (ERS) guidance about central sleep apnoea in children. 

This project will aim to review all the current evidence on the diagnosis, investigation and consequences of central apnoeas in infants and older children.

The guidance will be developed by a working group (called a Task Force) made up of healthcare professionals and parents/patients. 

Are you:

1. The parent of a child diagnosed with central sleep apnoea or;
2. Someone who was diagnosed with central sleep apnoea as a child (and now aged 18 years or over).

Would you be willing to:

• Join a panel of other parents/patients with experience of childhood central sleep apnoea
• Share your experiences and views by email and/or telephone conferencing
• Communicate in English (both verbal and written) with people from across Europe

Activities will include:

• Identifying important topics and key issues of concern to patients/parents
• Reviewing draft documents
• Helping to make a version of the guidance for patients/parents and the public
• Participate in the working group which will involve attending teleconference meetings and occasional face-to-face meetings in Europe (one to two members)

Expenses

Any costs for getting involved in the parent/patient advisory group, such as telephone calls, travel and accommodation costs will be covered in line with our expenses policy. This is a voluntary role, and we are unable to pay for your time.

How to get involved

If you would like to find out more, please email Barbara Johnson.