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AASM Central Disorders of Hypersomnolence Research

American Academy of Sleep Medicine(AASM)

Open to projects that address research gaps in the treatment of central disorders of hypersomnolence that were identified in the 2021 systematic review titled, Treatment of central disorders of hypersomnolence: an American Academy of Sleep Medicine systematic review, meta-analysis, and GRADE assessment and basic, translational, clinical and population research gaps identified by patient advocacy groups. Details for each research domain and related topic areas of interest are provided below. Only applications that fit into one or more of these research domains and topic areas will be considered responsive.

1. Basic and Translational Studies for Understanding Central Disorders of Hypersomnolence

Studies designed to understand the biological process and pathophysiology of central disorders of hypersomnolence and the mechanism of action of certain treatments are needed. Examples of topics that fall under this research domain include, but are not limited to:

Understanding the mechanisms of hypersomnia and excessive daytime sleepiness in specific conditions, so that more targeted therapies can be developed.
Understanding the role of the innate and adaptive immune system in the development of narcolepsy and other central disorders of hypersomnolence should herald clinical trials in immune modulating treatments that could attenuate disease severity.
Understanding the molecular architecture of the human orexin receptor to inform development and testing of orexin specific therapies.
Collecting mechanistic data for understudied conditions like Kleine-Levin syndrome, idiopathic hypersomnia, narcolepsy type 2 and hypersomnia due to specific medical and psychiatric disorders for targeted drug development and testing.
Investigating whether data and findings from published basic science sleep research are relevant to or can be applied to further the understanding, diagnosis, or treatment of central disorders of hypersomnolence.

2. Improvement of Diagnosis for Central Disorders of Hypersomnolence

Identification of central disorders of hypersomnolence currently poses a challenge, and there is a need to improve its diagnosis in sleep medicine practice and routine clinical practice. Examples of topics that fall under this research domain include, but are not limited to:

Developing novel diagnostic tools and methodologies.
Developing extended sleep studies needed for better diagnosis of idiopathic hypersomnia.
- In-house sleep clinic protocols for extended sleep studies to enable better phenotyping of hypersomnias (long sleep type, disrupted sleep, total 24+ hour sleep time).
- Evaluate home extended sleep studies, wearable EEGs/sleep monitors, etc.

3. Pharmacologic Treatments for Central Disorders of Hypersomnolence

There is a need for studies that directly compare different medications used to treat central disorders of hypersomnolence across the lifespan. Examples of topics that fall under this research domain include, but are not limited to:

Comparative-effectiveness studies of new medications that enter the market against standard treatments so physicians and patients can factor this information into treatment decisions. This includes studying treatment options other than stimulants for idiopathic hypersomnia since some patients cannot tolerate stimulants.
Well-designed studies evaluating the following:
- Commonly used traditional stimulants for central disorders of hypersomnolence, and/or
- Selective serotonin reuptake inhibitors/serotonin and norepinephrine reuptake inhibitors cataplexy treatments for people with narcolepsy type 1.
Prospective clinical trials for drugs widely used for treating cataplexy. The low cost of this therapy is attractive, and it is already commonly used across the world.
Research and develop front-line treatments for narcolepsy and other central disorders of hypersomnolence.
High quality randomized controlled trials for pediatric patients with central nervous system hypersomnias since children and adolescents may react differently to medications for hypersomnolence than adults, and side effect profiles can vary based on patient age.
Studies to discover how oxybates and other hypersomnia medicines work and to help predict which particular people with central disorders of hypersomnolence will most likely benefit from each of these medicines.

4. Patient-centered Outcome Measures for Central Disorders of Hypersomnolence

There is a need to identify, develop and validate patient-centered outcome measures that can be used to evaluate and monitor important outcomes in people with central disorders of hypersomnolence. Examples of topics that fall under this research domain include, but are not limited to:

Identifying validated outcome measures that most closely reflect patient priorities in order to develop and validate disease-specific patient-reported outcome measurement tools, and to delineate clinical significance thresholds to harmonize future research and facilitate future clinical guideline development.
Collecting data focused on quality of life measures, both cross-sectional and longitudinal, to help the field better understand aspects of the disease most disruptive to people’s lifestyles.
Evaluating treatments for narcolepsy and other central disorders of hypersomnolence in regard to patient satisfaction, ability to adhere and continue treatment, and overall quality of life.

Note: Proposals are encouraged to use standardized, validated assessments, which will permit clinicians and patients to compare clinical trial data to get an estimate of comparative effectiveness

5. Behavioral and Psychological Treatments for Central Disorders of Hypersomnolence

Reliance on medications alone to treat central disorders of hypersomnolence is likely insufficient without broader guidance on behavioral and psychological influences on symptom management. Examples of topics that fall under this research domain include, but are not limited to:

Evaluating cognitive behavioral therapy (in-person, online), other modes of therapy, sleep scheduling, naps for furthering medication effects and/or demonstrating independent treatment benefit.

6. Disparities and Health Access Equity Research for Central Disorders of Hypersomnolence

It is well-known that sleep disturbances and deficiencies affect disadvantaged populations, which lead to disproportionate sleep health disparities in the United States. However, little is known on how to best find, diagnose, and treat individuals with central disorders of hypersomnolence, particularly those from underrepresented communities. This is further hampered by lack of knowledge on central disorders of hypersomnolence among health care providers and the public, which can lead to delayed diagnosis, treatment, and support for people with central disorders of hypersomnolence. Examples of topics that fall under this research domain include, but are not limited to:

Developing a sleep disorder screening tool that is inclusive of all central disorders of hypersomnolence and can be used by the public, for example, on a website, where patients can answer a list of questions and receive information on a possible diagnosis, including information on how to follow up with a sleep medicine specialist and connect with patient advocacy groups.
- Any screening tool developed should consider whether there is a need for customization for people from diverse backgrounds.
- Delivery of the tool may differ by group.
Quantifying access to diagnosis and treatments for less common sleep disorders (e.g., central disorders of hypersomnolence) for people from diverse backgrounds.
Initiatives to accurately collect demographic fields in electronic health records to measure current diversity and health equity and lay foundation for further health equity research and improvement.
Increasing outreach to historically underserved populations, both patients and future providers.

Funding Information

The Strategic Research Grant program is organized into three categories to allow flexibility and a range of funding opportunities to potential applicants:

Category I is for those applicants seeking funding for projects up to $250,000 and covers a project period of up to three years.
Category II is for those applicants seeking funding for projects up to $100,000 and covers a project period of up to two years.
Category III is for those applicants seeking funding for projects up to $50,000 and covers a project period of up to one year.

There are no restrictions on the distribution of expenses, however, indirect costs are capped at 8%. The grant is executed as a contract between the AASM Foundation and the grantee’s institution. A sample contract is available here.

Obstructive Sleep Apnea (OSA) Research Gaps, AASM Strategic Plan Goals, Dissemination and Implementation Research and Sleep Health Disparities Research: Open to all three funding categories, with indirect costs capped at 8%

Supported by AASM Foundation general funds.

Central Disorders of Hypersomnolence Research: Open only to Category III proposals, with indirect costs capped at 8%

Supported by the Hypersomnia Foundation and AASM Foundation general funds.

Specialties

General Medicine

Public Health

Eligibility Requirements

The following individuals are eligible to apply:

Sleep scientists with a master’s level degree (MA, MS, MSN, MPH, or equivalent) or higher (MD, DO, DDS, DMD, DNP, DNSc, PharmD, PhD, or equivalent) are eligible to apply.
US and international applicants are eligible to apply.

Ineligibility

The following individuals are not eligible to apply:

Individuals who have a financial conflict of interest or have the potential to incur significant financial benefit from the proposed work and beyond the work itself are not eligible to apply.
Current AASM and AASM Foundation Board of Directors members are not eligible to apply and cannot be listed as a PI, co-PI, key personnel, mentor (paid or unpaid) or paid consultant for one year after their term ends.

Note: In rare instances, AASM and AASM Foundation Board members may serve as unpaid consultants on an application, however, this requires Executive Committee approval prior to submitting the application.

Sponsor Details

Sponsor Institute/Organizations: American Academy of Sleep Medicine(AASM)

Address: 2510 North Frontage Road Darien, IL 60561 Phone: (630) 737-9700 Fax: (630) 737-9790 foundation@aasm.org

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