--- title: Bringing Trials to Patients Could Improve Inclusivity in Rare Disease Research description: Bringing Trials to Patients Could Improve Inclusivity in Rare Disease Research --- [Skip to main content](https://www.rarediseasediversity.org/blog/bringing-trials-to-patients-could-improve-inclusivity-in-rare-disease-research#main) [![RDDC logo TM](https://www.rarediseasediversity.org/hubfs/RDDC-logo-TM.svg) ![RDDC logo TM Sticky](https://www.rarediseasediversity.org/hubfs/RDDC-logo-TM.svg) ![RDDC logo TM mobile](https://www.rarediseasediversity.org/hubfs/RDDC-logo-TM.svg) ![RDDC logo TM mobile sticky](https://www.rarediseasediversity.org/hubfs/RDDC-logo-TM.svg) ](https://www.rarediseasediversity.org) - [Show submenu for About the Coalition About the Coalition ](https://www.rarediseasediversity.org/about) - [Our Team](https://www.rarediseasediversity.org/rddc-team) - [Advisory Council](https://www.rarediseasediversity.org/rddc-advisory-council) - [Industry Alliance](https://www.rarediseasediversity.org/industry-alliance) - [Partners](https://www.rarediseasediversity.org/rddc-partners) - [Show submenu for What We Do What We Do ](https://www.rarediseasediversity.org/what-we-do) - [Working Groups](https://www.rarediseasediversity.org/what-we-do) - [Policy In Action](https://www.rarediseasediversity.org/policy-in-action) - [Get Involved](https://www.rarediseasediversity.org/rddc-get-involved) - [Show submenu for Patient Support Patient Support ](https://www.rarediseasediversity.org/additional-patient-support) - [Breaking Barriers: Genetic Testing](https://www.rarediseasediversity.org/breaking-barriers) - [Patient Stories](https://www.rarediseasediversity.org/rddc-patient-stories) - [Show submenu for The Latest The Latest ](https://www.rarediseasediversity.org/the-latest) - [Opportunities](https://www.rarediseasediversity.org/rddc-opportunities) - [News & Announcements](https://www.rarediseasediversity.org/blog) - [Resources & Research](https://www.rarediseasediversity.org/research-resources) - [Events](https://www.rarediseasediversity.org/rddc-events) Open main navigation Close main navigation - Show submenu for About the Coalition About the Coalition - About the Coalition - [About the Coalition](https://www.rarediseasediversity.org/about) - [Our Team](https://www.rarediseasediversity.org/rddc-team) - [Advisory Council](https://www.rarediseasediversity.org/rddc-advisory-council) - [Industry Alliance](https://www.rarediseasediversity.org/industry-alliance) - [Partners](https://www.rarediseasediversity.org/rddc-partners) - Show submenu for What We Do What We Do - What We Do - [What We Do](https://www.rarediseasediversity.org/what-we-do) - [Working Groups](https://www.rarediseasediversity.org/what-we-do) - [Policy In Action](https://www.rarediseasediversity.org/policy-in-action) - [Get Involved](https://www.rarediseasediversity.org/rddc-get-involved) - Show submenu for Patient Support Patient Support - Patient Support - [Patient Support](https://www.rarediseasediversity.org/additional-patient-support) - [Breaking Barriers: Genetic Testing](https://www.rarediseasediversity.org/breaking-barriers) - [Patient Stories](https://www.rarediseasediversity.org/rddc-patient-stories) - Show submenu for The Latest The Latest - The Latest - [The Latest](https://www.rarediseasediversity.org/the-latest) - [Opportunities](https://www.rarediseasediversity.org/rddc-opportunities) - [News & Announcements](https://www.rarediseasediversity.org/blog) - [Resources & Research](https://www.rarediseasediversity.org/research-resources) - [Events](https://www.rarediseasediversity.org/rddc-events) - Search - [Donate](https://www.rarediseasediversity.org/blog/?campaign=677445) [Donate](https://www.rarediseasediversity.org/blog/?campaign=677445) Search [Categories](https://www.rarediseasediversity.org/blog/bringing-trials-to-patients-could-improve-inclusivity-in-rare-disease-research#) - [RDDC News & Announcements](https://www.rarediseasediversity.org/blog/tag/rddc-news-announcements) - [RDDC Reflections](https://www.rarediseasediversity.org/blog/tag/rddc-reflections) - [Fellows](https://www.rarediseasediversity.org/blog/tag/fellows) - [RDDC Events](https://www.rarediseasediversity.org/blog/tag/rddc-events) - [RDDC in the News](https://www.rarediseasediversity.org/blog/tag/rddc-in-the-news) # Bringing Trials to Patients Could Improve Inclusivity in Rare Disease Research # Bringing Trials to Patients Could Improve Inclusivity in Rare Disease Research January 14, 2025 WASHINGTON, DC—A panel of experts at the [National Organization for Rare Disorders (NORD) 2024 Breakthrough Summit](https://www.rarediseaseadvisor.com/conferences/rare-diseases-orphan-products-breakthrough-summit/) explored how inclusivity in rare disease clinical research can be improved by bringing trials to where patients live, work, and receive medical care. Jenifer Waldrop, executive director of the Rare Disease Diversity Coalition, presented the results of a survey that showed underserved populations experience greater strain in managing their lives and caregiving responsibilities, which impacts their mental health and ability to participate in research. Additional factors included logistical barriers, financial strain, lack of trust in the healthcare system, and cultural considerations. The panel agreed that “decentralized” clinical trials were a big step in the right direction. Jim Palma, executive director of the TargetCancer Foundation, discussed how his group’s fully remote TRACK rare cancer clinical trial used technology and remote data collection to show how this model can reach patients across geographic and demographic boundaries.  “This model has allowed us to really reach patients where they are and ease the process by which they enroll,” Palma said. *[Expert Panel Explores How to Increase Access to Gene Therapy for Rare Diseases](https://www.rarediseaseadvisor.com/reports/panel-explores-ways-increase-accessibility-gene-therapy-rare-diseases/)* ###### Tags: Post by [Rare Disease Diversity Coalition](https://www.rarediseasediversity.org/blog/author/rare-disease-diversity-coalition) January 14, 2025 ## Our Partners [![The Aarskog Foundation](https://www.rarediseasediversity.org/hs-fs/hubfs/The-Aarskog-Foundation.png?width=150&height=80&name=The-Aarskog-Foundation.png) ](https://www.aarskogsyndromefoundation.co.uk) 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