In April 2025, the director of the National Institutes of Health described a proposal to "develop national disease registries, including a new one for autism." Days later, officials walked back claims that the intention was to develop an autism registry, and instead focused on plans to create a real-world data platform that would help researchers get more complete data. This was followed by an announcement that NIH would be partnering with the Centers for Medicare & Medicaid Services to create a data platform aiming to "uncover the root causes of autism and other chronic diseases.” People in the autism community have expressed concern that a patient registry like this carries potential risks, including diminished family and community trust, threats to data privacy, and perpetuating harmful narratives. In today’s episode, Aaron brings his day job as AcademyHealth CEO into the show, sharing the latest findings, policy battles, and what it all means for real people. Special thanks to Steph Lomangino, Suzanne Farris, and Elizabeth Cope, from whose Academy Health blog post this episode was adapted: https://academyhealth.org/blog/2025-07/navigating-trust-building-ethical-autism-research-real-world-data Related HCT episodes: Aspartame and Autism: https://youtu.be/B3yh7-j5i2s Be sure to check out our podcast! https://www.youtube.com/playlist?list=PLkfBg8ML-gInFaYyYhKLBp2u7h5IojTw4 Other Healthcare Triage Links: 1. Support the channel on Patreon: http://vid.io/xqXr 2. Check out our Facebook page: http://goo.gl/LnOq5z 3. We still have merchandise available at http://www.hctmerch.com 4. Aaron's book "The Bad Food Bible: How and Why to Eat Sinfully" is available wherever books are sold, such as Amazon: http://amzn.to/2hGvhKw Credits: Aaron Carroll -- Writer Tiffany Doherty -- Writer and Script Editor John Green -- Executive Producer Stan Muller -- Director, Producer Mark Olsen – Art Director, Producer