Clinical Trials – what you need to know about outcome measures

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How do you know an intervention is working? It starts with making sure you are measuring the right thing. This week, Drs. Mary Wojnaroski from Nationwide Children’s Hospital and Natasha Ludwig from the Kennedy Krieger Institute who work on the Inchstone Project to talk about outcome measures around intellectual function and cognition. Some tools might be used to measure both strengths and weaknesses in those with intellectual disability. But first, clinicians need to know what impacts families the most. What skills are most important to help their children leave fulfilling lives?

YOU can be a part of this work! The Inchstone Project is launching a new survey for families of those with IDD or seizures or global developmental delay. This important survey to a wide group of caregivers asks what are the biggest priorities in an intervention study and what makes the most difference to them. TAKE THE SURVEY HERE: https://inchstoneproject.org/pss2/

How to capture the real onset patterns of autism

Autism does not start at one, two or three years. It is a condition with trajectories, where some individuals show signs early, others later. It doesn’t just happen after some mysterious “medical event”, people are born with it. Scientists know this by tracking outcomes of those with a high likelihood of autism all the way from birth to school age.

We need more research on why features do not show up the same in each person, and how you can predict not just an autism diagnosis but other co-occurring conditions that are common in autism. Finally, science on how to best support each person with autism across their lifespan must continue, not stop. @UCL and @KCL are conducting just that type of research – that understands that features of autism change over time, emerge at different ages and also are accompanied by different biological features. This week we talk to Tony Charman, Tessel Bazelmans, Emily Jones and Mark Johnson who are pioneers in understanding how autism features emerge and change over time, but start in early infancy.

https://pubmed.ncbi.nlm.nih.gov/42640439

https://pubmed.ncbi.nlm.nih.gov/42410708