Could you help put patient or parent views at the heart of a guideline for children with bronchiectasis?
We need patients and parents to input into the development of the first European Respiratory Society (ERS) international guideline for the management of bronchiectasis in children.
This guideline will aim to raise awareness and encourage an evidence-based approach to the management of bronchiectasis in children and will complement the guideline for adults with bronchiectasis that was published in 2017.
This guideline will cover bronchiectasis that is not related to cystic fibrosis.
The guideline will be developed by a working group (called a Task Force) made up of healthcare professionals and parents/patients.
- The parent of a child diagnosed with bronchiectasis or;
- Someone who was diagnosed with bronchiectasis as a child (and now aged 18 years or over).
We are looking for people diagnosed with bronchiectasis that have no other diagnosed condition (e.g. cystic fibrosis). People with a diagnosis of bronchiectasis and primary ciliary dyskinesia (PCD) are eligible to be involved.
Would you be willing to:
- Join a panel of other parents/patients with experience of childhood bronchiectasis
- 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
- Helping to develop a survey to find out more about patient needs and research priorities
- Completing a survey to share your experiences and views
- Reviewing guideline draft documents
- Helping to make a guideline version for patients/parents and the public
- Participate in the guideline working group which will involve attending teleconference meetings and occasional face-to-face meetings in Europe (one to two members)
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 Jeanette Boyd.