ELF was invited to speak on the ‘Unmet needs in chILD: the parent/patient perspective’ at the COST Action ENTeR-chILD Conference in Prague, Czech Republic at the beginning of November.
Children’s interstitial lung disease (chILD) is a large group of rare lung conditions found in infants, children and adolescents and at the moment there is relatively little research on them. This conference, funded by COST, was an important opportunity for clinicians to meet and share their ideas and research plans, and to make contacts for future projects. We were delighted to be able to represent the views of parents of children with interstitial lung disease at this inaugural conference in the field.
ELF presented the results of an online international parent survey carried out between August and October 2017. The survey was developed with members of our chILD parent advisory group, which is made up of 10 people from Australia, Denmark, Spain, Germany, Ireland, Israel, UK and USA. It aimed to find out which issues parents think are most important, to inform the work of clinicians in the field.
We received 153 survey responses from people in 13 countries. Three key findings were that parents need:
We are currently working with the chILD parent advisory group and clinicians in the field to develop an information website for parents of children with interstitial lung disease. The website is due to be launched in spring 2018.
For further information please get in touch with Jeanette Boyd.
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