Measuring quality of life is important, particularly in clinical trials, to capture the broader impacts of treatment beyond just measuring seizures.&nbsp;
To help understand what outcome measures are and why they are important to spoke to Dr Jenny Downs, Program Head of Disability Research at the Telethon Kids Institute in Perth.&nbsp;
You can listen to and subscribe to the SCN2A Insights podcast via&nbsp;<a href="https://podcasts.apple.com/au/podcast/scn2a-insights/id1479681243?mt=2&amp;app=podcast">Apple Podcasts</a>, &nbsp;<a href="https://open.spotify.com/show/6KrDEmN7XPh8oDR7zR48cy">Spotify</a>, and&nbsp;<a href="https://podcasts.google.com/?feed=aHR0cHM6Ly93d3cub21ueWNvbnRlbnQuY29tL2QvcGxheWxpc3QvMjNkMTM3YTEtNDQxNi00MGQ2LWE1ZmMtYTUyOTAwMDFlY2RkLzA5MmMwZGNhLWQ0OTgtNDlkYy1hY2RkLWFhNzgwMGI3YWIyZC9jZDc2ZmU4Ni05MTA3LTQxMzYtYmY4Mi1hYTc4MDBiODVmZWQvcG9kY2FzdC5yc3M%3D">Google Podcasts</a>&nbsp;or in your podcast app.
Links:&nbsp;
<ul>
<li><a href="https://www.telethonkids.org.au/our-research/brain-and-behaviour/disability/child-disability/qi-disability/">Information on Quality of Life Inventory-Disability (QI-Disability)</a></li>
<li><a href="https://pubmed.ncbi.nlm.nih.gov/30460513/">Validation study of QI-Disability</a></li>
<li><a href="https://scn2aaustralia.org/wp-content/uploads/2021/03/QoL-study.pdf">Want to help developing quality of life measures for children with genetic epilepsy?</a></li>
</ul>See <a href="https://omnystudio.com/listener">omnystudio.com/listener</a> for privacy information.

<description>&lt;p&gt;Measuring quality of life is important, particularly in clinical trials, to capture the broader impacts of treatment beyond just measuring seizures.&amp;nbsp;&lt;/p&gt;
&lt;p&gt;To help understand what outcome measures are and why they are important to spoke to Dr Jenny Downs, Program Head of Disability Research at the Telethon Kids Institute in Perth.&amp;nbsp;&lt;/p&gt;
&lt;p&gt;You can listen to and subscribe to the SCN2A Insights podcast via&amp;nbsp;&lt;a href="https://podcasts.apple.com/au/podcast/scn2a-insights/id1479681243?mt=2&amp;amp;app=podcast"&gt;Apple Podcasts&lt;/a&gt;, &amp;nbsp;&lt;a href="https://open.spotify.com/show/6KrDEmN7XPh8oDR7zR48cy"&gt;Spotify&lt;/a&gt;, and&amp;nbsp;&lt;a href="https://podcasts.google.com/?feed=aHR0cHM6Ly93d3cub21ueWNvbnRlbnQuY29tL2QvcGxheWxpc3QvMjNkMTM3YTEtNDQxNi00MGQ2LWE1ZmMtYTUyOTAwMDFlY2RkLzA5MmMwZGNhLWQ0OTgtNDlkYy1hY2RkLWFhNzgwMGI3YWIyZC9jZDc2ZmU4Ni05MTA3LTQxMzYtYmY4Mi1hYTc4MDBiODVmZWQvcG9kY2FzdC5yc3M%3D"&gt;Google Podcasts&lt;/a&gt;&amp;nbsp;or in your podcast app.&lt;/p&gt;
&lt;p&gt;Links:&amp;nbsp;&lt;/p&gt;
&lt;ul&gt;
&lt;li&gt;&lt;a href="https://www.telethonkids.org.au/our-research/brain-and-behaviour/disability/child-disability/qi-disability/"&gt;Information on Quality of Life Inventory-Disability (QI-Disability)&lt;/a&gt;&lt;/li&gt;
&lt;li&gt;&lt;a href="https://pubmed.ncbi.nlm.nih.gov/30460513/"&gt;Validation study of QI-Disability&lt;/a&gt;&lt;/li&gt;
&lt;li&gt;&lt;a href="https://scn2aaustralia.org/wp-content/uploads/2021/03/QoL-study.pdf"&gt;Want to help developing quality of life measures for children with genetic epilepsy?&lt;/a&gt;&lt;/li&gt;
&lt;/ul&gt;&lt;p&gt;See &lt;a href="https://omnystudio.com/listener"&gt;omnystudio.com/listener&lt;/a&gt; for privacy information.&lt;/p&gt;</description>

Measuring quality of life is important, particularly in clinical trials, to capture the broader impacts of treatment beyond just measuring seizures.

SCN2A Insights

Quality of Life Measures

Quality of Life Measures

Description