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Patient perspectives on research gaps in cluster headache
Faraidoon Haghdoost1, Dilara Bahceci1, Candice Delcourt1,2
1The George Institute for Global Health, University of New South Wales, Sydney, New South Wales, Australia.
Headache
|January 21, 2026
Summary
Cluster headache patients desire better treatments and research. Many are interested in clinical trials, especially for psilocybin and combination therapies, indicating a need for improved cluster headache management.
Area of Science:
- Neurology
- Clinical Research
- Patient-Reported Outcomes
Background:
- Cluster headache significantly impacts quality of life with limited effective treatments.
- There is a critical need for more clinical trials to advance cluster headache management.
- Patient engagement is vital for designing and conducting successful research.
Purpose of the Study:
- Identify gaps in current cluster headache management.
- Determine patient-prioritized research needs and preferences.
- Assess patient interest in clinical trial participation.
Main Methods:
- An online survey was distributed to Australian adults with self-reported cluster headache.
- Participants were recruited through clinicians, advocacy groups, and social media.
- Data collected included demographics, treatment experiences, research priorities, and trial interest.
Main Results:
- 202 participants completed the survey; 72% had sought care, with general practitioners and neurologists most consulted.
- Treatment ineffectiveness (74%), side effects (54%), and cost (53%) were major challenges.
- 62% expressed interest in clinical trials, with high interest in psilocybin (66% very interested) and combination therapies (84% interested).
Conclusions:
- Cluster headache patients face inadequate treatment options and unmet research needs.
- There is substantial patient interest in participating in clinical trials.
- Psilocybin and combination therapies are highly desired treatment avenues for future research.
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