{"podcast":{"title":"Decentralized: The Decentralized Trials & Research Podcast","slug":"decentralized-the-decentralized-trials-research-podcast-6281264","podcast_index_feed_id":6281264,"rss_url":"https://feeds.captivate.fm/decentralized-podcast/","website_url":"https://www.dtra.org","image_url":"https://artwork.captivate.fm/196acf6b-0c14-4480-94cb-365b0129ceca/WP9VB6OATbVh2ov42feJLjKF.jpg","author":"Decentralized Trials & Research Alliance (DTRA)","episode_count":116,"summary":"Decentralized: The Decentralized Trials & Research Podcast is brought to you by the Decentralized Trials & Research Alliance (DTRA). We are joined each week by passionate leaders in the DCT & Clinical Research community to share insight and vision into the future of research. You can find this podcast live every Fridays at 12:00 PM EST on Clubhouse at the Decentralized Trials Club (https://www.clubhouse.com/club/decentralized-trials). The Podcast will be a replay of the live Clubhouse conversation on Friday's at 12:00 PM ET. The replay of those episodes will drop every Monday, with additional episodes being posted from the archives of 2021-2022 along the way. We encourage you to connect with us on LinkedIn at Decentralized Trials & Research Alliance (DTRA) and on Twitter @DTRAOrg to learn more about the organization.","last_synced_at":"2026-06-09T04:17:52.611525+00:00","page_url":"https://stenobird.com/podcast/decentralized-the-decentralized-trials-research-podcast-6281264"},"episode":{"title":"Home visits for Rare Disease Research","slug":"home-visits-for-rare-disease-research","published_at":"2025-08-25T13:00:00+00:00","page_url":"https://stenobird.com/podcast/decentralized-the-decentralized-trials-research-podcast-6281264/home-visits-for-rare-disease-research","show_page_url":"https://stenobird.com/podcast/decentralized-the-decentralized-trials-research-podcast-6281264","url":"https://www.dtra.org","audio_url":"https://dts.podtrac.com/redirect.mp3/episodes.captivate.fm/episode/91552218-8ee5-4321-a9e5-755cf806b2b5.mp3","summary":"2025-08-22 Hosts Craig Lipset and Jane Myles hosted a conversation with Alpa Kushillani , VP of Customer Success & Delivery with Gooseberry Research and a rare disease advocate. Alpa shares her family’s journey with Duchenne muscular dystrophy and how those experiences inspired her to create new solutions for patient-centered research. We explore the realities of clinical trial participation for rare disease families—from challenges in home healthcare and nurse training to the promise of digital health tools and decentralized approaches. Alpa highlights how Gooseberry Research is working to improve trial accessibility through specialized nurse training, stronger site communication, and partnerships with technology providers. The episode also touches on trial design hurdles, the need for meaningful endpoints, and the future of decentralized clinical trials. Episode Resources: DCT Market Trend Research About a Novel, Home-Based Assessment for Duchenne Muscular Dystrophy You can join TGIF-DTRA Sessions live on LinkedIn Live on Friday's at 12:00 PM ET by checking out our LinkedIn. Follow the Decentralized Trials & Research Alliance (DTRA) on LinkedIn and X . Learn more about Membership options and our work at www.dtra.org .","meta_description":"2025-08-22 Hosts Craig Lipset and Jane Myles hosted a conversation with Alpa Kushillani , VP of Customer Success & Delivery with Gooseberry Research a…","key_points":[],"chapters":[],"topics":[],"duration_seconds":3553,"processing_state":"not_requested","actions":[{"name":"request_transcript","method":"POST","url":"https://stenobird.com/v1/public/podcasts/decentralized-the-decentralized-trials-research-podcast-6281264/episodes/home-visits-for-rare-disease-research/transcription-requests","description":"Idempotently request low-priority transcript generation for this episode."},{"name":"read_markdown","method":"GET","url":"https://stenobird.com/podcast/decentralized-the-decentralized-trials-research-podcast-6281264/home-visits-for-rare-disease-research.md","description":"Read the agent-friendly Markdown representation of this episode resource."}]}}