# Home visits for Rare Disease Research

Page: https://stenobird.com/podcast/decentralized-the-decentralized-trials-research-podcast-6281264/home-visits-for-rare-disease-research
Text version: https://stenobird.com/podcast/decentralized-the-decentralized-trials-research-podcast-6281264/home-visits-for-rare-disease-research.md
Podcast: [Decentralized: The Decentralized Trials & Research Podcast](https://stenobird.com/podcast/decentralized-the-decentralized-trials-research-podcast-6281264)
Published: 2025-08-25T13:00:00+00:00
Episode link: https://www.dtra.org
Audio file: https://dts.podtrac.com/redirect.mp3/episodes.captivate.fm/episode/91552218-8ee5-4321-a9e5-755cf806b2b5.mp3
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JSON: https://stenobird.com/v1/public/podcasts/decentralized-the-decentralized-trials-research-podcast-6281264/episodes/home-visits-for-rare-disease-research
Duration seconds: 3553

## Resource

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 .

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