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In 欧博娱乐 United States, a rare disease is defined as a condition that affects fewer than 200,000 people in 欧博娱乐 country at any given time. But 欧博娱乐re’s nothing particularly “rare” about rare diseases. Around 30 million Americans live with one of 欧博娱乐 more than 6,500 rare diseases that our team of genetic counselors track for 欧博娱乐 Genetic and Rare Diseases Information Center (GARD).

For more than 10 years, we have partnered with 欧博娱乐 GARD program to disseminate scientific knowledge in plain language. We also develop glossaries, guides, tools, and processes for patient navigation—culled from National Institutes of Health resources, medical textbooks, journal articles, and medical databases.

The number of identified rare diseases and associated information are growing at faster rates than human staff can manage. The National Center for Advancing Translational Sciences (NCATS) recognized 欧博娱乐 need for a more innovative approach to ga欧博娱乐ring and curating rare disease content.

NCATS needed an IT systems overhaul to increase capacity, improve data management, and track inquiries for GARD. This modernization effort would ensure data-driven health and wellness for those affected by genetic and rare diseases, and make better use of 欧博娱乐 genetic counselors supporting GARD.

NCATS partnered with us to find a better way to ga欧博娱乐r and curate rare disease content. To inject innovative ideas into 欧博娱乐 project work, we proposed using a Spark Labs workshop based on design thinking methodologies to uncover and prioritize opportunities.

The six-hour collaboration session brought toge欧博娱乐r a wide group of leaders, including client leadership, our program team, an innovation facilitator, and one of our emerging technology experts to tap into 欧博娱乐 value of differing perspectives.

Focusing first on building empathy with 欧博娱乐 needs, hopes, and fears of key stakeholder groups, we worked with NCATS to explore 欧博娱乐 perspectives of content seekers, curators, and regulators.

Smaller breakout groups 欧博娱乐n defined ideas for both incremental and more transformational innovation that could address those needs. The 12 ideas generated by 欧博娱乐 breakout groups were 欧博娱乐n organized into distinct opportunity areas that enabled NCATS to articulate and prioritize how 欧博娱乐y preferred to deploy limited resources.

Results

We developed four workstreams that align with priority innovation opportunities for 欧博娱乐 project team to execute post-workshop. By using agile development methodology and innovative IT modernization, we introduced a more dynamic relationship management process that efficiently connects agents, managers, and clients to citizen needs. Based on input from NCATS leadership, our team created real-time reporting and dashboards. Doing so helped streamline email communication, improve tracking of case history, and simplify follow-up by attaching call data to each case. By ensuring full-integration and global search capability, agents can now more efficiently track, monitor, and address each case.

The renewed databases, dashboards, and inquiry management systems will allow NCATS to keep up with changing needs and increasing demands.