Oireachtas Joint and Select Committees

Tuesday, 31 January 2023

Joint Oireachtas Committee on Autism

Autism Policy: Discussion (Resumed)

Dr. Lorna Lopez:

Sleep is a core aspect of the campaign, which the public is really interested in. For the pilot study in family sleep the work was involved in different aspects of the research . The first was the technology to measure sleep using sensor technology. We looked to find the best and most innovative technology we could use, which would also be non-invasive. We did pilot work to make sure that we were using the best technology available. However, an important part of that process was the sensitivity and data management of it. You are managing huge amounts of data over a long period. We were guided by Maynooth University in different principles for that. That was the sensor technology. In terms of the activity, we worked to develop straps for different watches based on whether they were wearable or not.

Another aspect of the pilot study was the collection of DNA as part of the genetics study. For that, one method is to spit saliva into a tube to collect DNA and that can be quite challenging. We needed to think of better ways to communicate how to do that. We used things like stop-motion videos and nice communication videos to disseminate and explain that better. However, a real core of our work was using our public patient involvement panel to help us develop our literature, like our consent forms and public information leaflets. It helped us make sure that any of the information we were putting through is using the correct language, that it explains things correctly, and it really helped to develop our approach. Our research parties and research directions have also been assessed. We invested really heavily in setting up that study so we hope that investment will help us in the follow-through of the research project. Does that answer the question?

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