Prof Mirjam van der Burg will moderate this edition of the ESID Grand Rounds webinars where she will introduce the project Don’t give XLA time!
The aim of this project is to investigate whether early detection of XLA results in clinical health gain and an improved quality of life (QoL) for patients. In addition, as parental support is paramount for any NBS program, parental views on NBS for XLA will be studied on a global scale. Our research project will provide the much-needed scientific evidence to support NBS for XLA and will be of value to all countries that are considering screening for XLA. We are working towards universal NBS for XLA, leading to better outcomes for all future XLA patients worldwide. In addition, we will identify the most suitable test method for newborn screening.
After participating in this webinar, participants should be able to:
. Know what the current long-term outcomes are for patients with XLA
. Understand the rationale for early diagnosis of XLA
. Be informed about efforts to develop newborn screening for XLA