Meetings

Series Discussion 2: Conducting Clinical Trials Amid COVID-19

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The Rare Diseases Forum held its second discussion in a series for the Conducting Clinical Trials Amid COVID-19 working group on July 9, 2020. This working group will focus on the challenges in conducting clinical trials for rare diseases amid the COVID-19 pandemic and, as possible, document best practices and develop recommendations. This group will also explore how to address unplanned changes in clinical trials in rare diseases affected by COVID-19 and other potential future health emergencies and pandemics, while maintaining the scientific integrity and interpretability of study results.
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Series Discussion 1: Conducting Clinical Trials Amid COVID-19

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The Rare Diseases Forum held its first series discussion for the Conducting Clinical Trials Amid COVID-19 working group on May 15, 2020. This working group will focus on the challenges in conducting clinical trials for rare diseases amid the COVID-19 pandemic and, as possible, document best practices and develop recommendations. This group will also explore how to address unplanned changes in clinical trials in rare diseases affected by COVID-19 and other potential future health emergencies and pandemics, while maintaining the scientific integrity and interpretability of study results.
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Webinar: Bayesian Studies in Rare Diseases

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Original Webinar Date: January 22, 2020

The Rare Diseases Forum held its first webinar for the Bayesian Studies in Rare Diseases Working Group, under the Innovation in Trial Designs Workstream. 175 people registered for the session which was the launch event for the working group. Registrants represented patients, advocacy organizations, academia, federal agencies, industry, professional societies, and other relevant entities. This workstream was initiated to address a challenge by Dr. Janet Woodcock at the Rare Diseases Forum 1 meeting to transform the clinical trial paradigm for rare diseases through application of novel approaches.

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Rare Diseases Workshop 1

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The Rare Diseases Forum Workshop 1 "Innovation in Trial Designs: Bringing Lessons from the Oncology Experience to Rare Diseases" was held on Monday, September 23, 2019 at the National Press Club, in Washington, DC. 106 people attended the event. Of those, 80 attended in person, and 26 registered for the webcast. This workshop was the launching event for the "Innovation in Trial Designs" work stream. The event convened a stellar group of experts in oncology, rare diseases and statistics.

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Rare Diseases Forum 1

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The Rare Diseases Forum 1 was held on October 17 at the Carnegie Endowment for International Peace in Washington DC. 115 people attended the Forum 1. Of those, 99 attended in person, and 16 people registered for the webcast.
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