Summary: The Sleep Consortium announced the Illuminate Hypersomnia Adjunct Scientific Meeting, a virtual session on Feb 13, 2025, to address drug development challenges for idiopathic hypersomnia (IH). Building on insights from a previous patient-focused meeting and survey, the event will bring together experts in sleep medicine, pharmaceutical research, and advocacy to tackle barriers in IH research and treatment. Key topics include understanding and measuring brain fog, overcoming participation hurdles in research studies, and advancing solutions for unmet patient needs.
Key Takeaways:
- Focus on Brain Fog and Clinical Trials: The meeting will explore ways to define and measure brain fog in IH studies and address barriers to patient participation in clinical research.
- Global Collaboration: Experts from sleep medicine, pharmaceutical research, and patient advocacy will work together to translate patient feedback into tangible advancements for IH treatment.
- Momentum from Patient Insights: The meeting builds on findings from the Illuminate Hypersomnia Voice of the Patient report, emphasizing the urgent need for innovation in IH therapies.
The Sleep Consortium, in collaboration with a coalition of partner organizations and sponsors, announced the Illuminate Hypersomnia Adjunct Scientific Meeting, scheduled for Feb 13, 2025, from 12 to 2 pm. EST.
This virtual scientific session aims to address critical challenges in drug development for idiopathic hypersomnia (IH), as identified during the Illuminate Hypersomnia Externally-Led Patient-Focused Drug Development meeting held on April 11.
The Illuminate Hypersomnia Adjunct Scientific Meeting will bring together experts in the fields of sleep medicine, pharmaceutical research, regulatory science, medical affairs, and patient advocacy. The focus will be on collaborative efforts to overcome key hurdles in the development of effective treatments for IH.
Meeting topics are drawn directly from the Illuminate Hypersomnia Voice of the Patient report, based on extensive feedback collected through the Externally-Led Patient-Focused Drug Development meeting and a survey that attracted 811 responses from people living in 21 countries.
Registration for the scientific meeting is now open to all, and the agenda features leading global experts in the field.
Key discussion areas include:
- Close examination of “brain fog,” a disabling symptom of IH that persists beyond the transition from sleep to alertness (sleep inertia)
- Definition of approaches to better defining and measuring brain fog in IH studies and clinical trials
- Review of barriers to participation in IH research studies
- Generation of considerations for recruiting and retaining people with IH in research studies
- Discussion of approaches to address unmet needs to advance the field and improve patient outcomes
“The April 2024 [Externally-Led Patient-Focused Drug Development] meeting and survey attracted hundreds of individuals with IH, caregivers, and advocates to share their experiences, treatment priorities, and the unmet medical needs within the IH community. Their testimonies underscored the urgent need for accelerated research and innovation to bring new therapies to market,” says Sleep Consortium co-founder and CEO Lindsay Jesteadt, in a release. “Our goal with this adjunct meeting is to leverage the momentum from that event and bring together the scientific community to focus on translating those patient perspectives into tangible advancements in drug development and care.”
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