We believe that lived experience is expertise, and that partnership—not tokenism—is the foundation of better science.

The Patient Leadership in Research (PLIR) program was originally developed and led by the American Sleep Apnea Association (ASAA) to train sleep apnea patients and caregivers as research collaborators. While this began with sleep apnea, WSCN will expand and grow the program to include the breadth of sleep and circadian disorders.

We believe in asking people first: what will work for you not just as patients, but as people. Join us as we grow the program, we promise to ensure you will always feel seen and heard.

About the PLIR Program

Are you living with a disorder related to sleep and circadian health or are you caring for someone with a disorder? If yes, then we would love to have you join the program! If you join the program, you will complete a 12-week course to understand the science and the research process, equipping you to contribute meaningfully to research.

The program aligns with PCORI’s six foundational expectations for research partnerships:

• Diverse representation
• Early and ongoing engagement
• Fair compensation
• Capacity building
• Shared decision-making
• Continuous evaluation

This program is important to WSCN because it creates a bridge between lived experience, research, and meaningful outcomes that impact lives.

Recent Research

Research is the foundation of progress in sleep and circadian health. It generates evidence that improves care, informs education that is practical and relevant, and drives innovation that honors diverse needs and lived experiences.

At WSCN, research is never abstract—it is a collaborative, human-centered pursuit. We are committed to patient-first research: inquiry that honors lived expertise, invites patient voices at every stage, and produces knowledge that is actionable, inclusive, and transformative. Our goal is to empower individuals to take charge of their health across the full 24-hour cycle.

Formerly the American Sleep Apnea Association (ASAA), we have long prioritized research—particularly in sleep apnea—and championed the role of patient voices in shaping scientific discovery. That legacy continues as we broaden our focus to support a wider range of research advancing the understanding, treatment, and prevention of sleep and circadian disorders.
Explore the studies and resources below to see how the patient voice continues to guide, inform, and inspire discovery.

AWAKE Sleep Apnea: Raising Voices for Progress in Treatment and Care

The AWAKE Sleep Apnea initiative amplifies the voices of people living with sleep apnea to improve treatment and care. By sharing their experiences, needs, and priorities directly with healthcare professionals and policymakers, this initiative aims to make care more responsive, equitable, and patient-centered.

Through surveys, conferences, and published reports, AWAKE documents the real-world impact of sleep apnea and identifies opportunities to improve treatment, support, and outcomes.

In 2018, the ASAA surveyed 5,630 individuals living with sleep apnea, gathering insights through 32 in-depth questions about their daily experiences. Participants came from the ASAA’s online network and from Evidation, an organization specializing in patient-generated data.

Patient-Focused Medical Product Development Meeting (PFMPDM)

In June 2018, the survey findings were presented at a Patient-Focused Medical Product Development Meeting (PFMPDM) on sleep apnea, funded by the ASAA and conducted as part of a U.S. Food and Drug Administration (FDA) program. These meetings are designed to systematically gather patient perspectives to inform regulatory decisions.

A PFMPDM brings together patients, caregivers, medical product developers, researchers, and regulators to share insights about living with a condition and the real-world impact of current treatments. The 2018 Sleep Apnea PFMPDM helped elevate patient voices within medical product development and regulatory discussions.

You can read a full analysis of the survey and conference outcomes in our A.W.A.K.E. Sleep Apnea Report.

Review the Project Poster: Listening to the Patient Voice

O₂Verlap Study

About 60% of individuals living with both chronic obstructive pulmonary disease (COPD) and obstructive sleep apnea—known as Overlap Syndrome—are not consistently using their continuous positive airway pressure (CPAP) masks as prescribed. This increases risks of flare-ups and hospitalizations.

To address this, the ASAA and the COPD Foundation partnered to deliver an interactive online classroom aimed at supporting CPAP adherence among people with Overlap Syndrome.

We thank the more than 1,300 participants who engaged with this initiative.

• Download the Full Report
• The O₂VERLAP Study: High CPAP Use Levels Found in Overlap Syndrome

The SleepHealth Mobile App

The SleepHealth Mobile App was developed as an innovative, personalized tool to help individuals:

• Gain insights into their sleep habits and patterns
• Understand connections between sleep and other health conditions
• Take proactive steps to improve their sleep health

Powered by Apple’s ResearchKit and IBM Watson Health Cloud, the app provided daily check-ins to monitor alertness and paired with the Apple Watch to track physical activity and sleep data. It also offered practical checklists and tips for improving sleep.

1. Review the Project Poster: SleepHealth App
2. Review the Psychomotor Vigilance Task Poster
3. Access the Sage SleepHealth Research Portal
4. Read the Nature SleepHealth Data Descriptor

Finding Clinical Trials

A government resource providing access to publicly and privately supported clinical studies across a wide range of conditions.
Visit ClinicalTrials.gov

Search Clinical Trials

A free service by CISCRP that helps individuals find relevant clinical trials. Staff work directly with participants to match needs with available opportunities, locally or regionally.

Visit Search Clinical Trials

CenterWatch

CenterWatch offers searchable listings of clinical trials and allows users to sign up for email alerts when new studies are posted in areas of interest.

Visit CenterWatch