What we learn from linking data

The NIH has launched the new Autism Data Science Initiative: https://dpcpsi.nih.gov/autism-data-science-initiative/funding-opportunities#section1, which brings questions about why linking different data sets is important. It can be done without including personal identifying information, and it should be done following ethical guidelines. If done correctly, using large datasets can answer questions relating to treatment, cause, better identification and personalized medicine for those on the spectrum. So what has linking data done for families? This week’s podcast summarizes longitudinal research that follows individuals across time, linking their information across different ages to look at factors that predict outcomes, environmental factors, and how to best support those on the spectrum.

https://pubmed.ncbi.nlm.nih.gov/40420626

https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-025-02739-4

https://pubmed.ncbi.nlm.nih.gov/40391067

https://pubmed.ncbi.nlm.nih.gov/40309015

https://pubmed.ncbi.nlm.nih.gov/40401338

The extra benefit of caregiver mediated interventions

This week, a new systematic review published by researchers at Virginia Polytechnic Institute looked at the existing evidence around caregiver (parent) mediated interventions and not child outcome, but family relationships and dynamics. While it isn’t the focus on the intervention, what effect does allowing parents to be involved and empowered on their child’s support on the wider family?  The answer is, it does help, although not all interventions are the same.  Also, a new video tool from collaborators at Washington University and the UC Davis MIND Institute to help parents identify early signs and symptoms in their own children was validated, which is exciting but more work needs to be done.