{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,3,8]],"date-time":"2026-03-08T14:43:04Z","timestamp":1772980984456,"version":"3.50.1"},"reference-count":27,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2026,1,21]],"date-time":"2026-01-21T00:00:00Z","timestamp":1768953600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"},{"start":{"date-parts":[[2026,1,21]],"date-time":"2026-01-21T00:00:00Z","timestamp":1768953600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"content-domain":{"domain":["headachejournal.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Headache"],"published-print":{"date-parts":[[2026,2]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>This study was undertaken to identify gaps in cluster headache management, highlight patient\u2010prioritized research needs, and assess patient interest in, and preferences for, clinical trial participation.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Many people with cluster headache still lack effective treatment options to control or prevent attacks. There is a critical need for more studies, particularly clinical trials, in this field. To design and conduct successful trials, it is essential to identify priority research areas, allocate resources effectively, and ensure patient engagement and support.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>This study was an online survey conducted among Australian adults with self\u2010reported cluster headache. Participants were recruited using a multi\u2010channel approach, including direct outreach by clinicians, support from patient advocacy groups, and broad social media distribution. It collected data on demographics, treatment experiences, and perspectives on future research, including research priorities, and preferred outcomes and interventions. Additionally, participants' interest in joining clinical trials was assessed to help identify potential candidates for future studies.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Of the 219 individuals who began the survey, 17 (8%) were excluded due to providing no responses beyond demographic data or reporting no cluster headache diagnosis by a healthcare professional. The final sample consisted of 202 participants, with an average age of 46\u2009years, 77% aged 25\u201354 years, 55% male, 72% had been living with cluster headache for more than 10\u2009years, and 29% reported attacks occurring almost every month throughout the year.<\/jats:p>\n                    <jats:p>\n                      A quarter of participants had not followed up with a healthcare provider for cluster headache management when they completed the survey. Among those who sought care (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u2009145 [72%]), general practitioners were the most frequently consulted (86%), followed by neurologists (66%). Treatments were considered \u201cnot at all effective\u201d or \u201csomewhat ineffective\u201d by 35% of all participants, while 27% reported only partial effectiveness. The main treatment challenges were ineffectiveness (74%), side effects (54%), cost (53%), and difficulties with access (39%).\n                    <\/jats:p>\n                    <jats:p>Among the 202 participants, 126 (62%) indicated interest in participating in future cluster headache trials, while 26 (13%) responded with \u201cmaybe.\u201d Psilocybin was the highest\u2010ranked treatment in terms of participants who were \u201cvery interested,\u201d with 66% selecting this option. The combined proportion of participants who were \u201cvery interested\u201d or \u201cinterested\u201d was 84% for combination therapies, 82% for psilocybin, 71% for medical devices, and 66% for anti\u2010CGRP treatments.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Participants with reported cluster headache highlighted inadequate treatment options, emphasized the need for further research, and expressed interest in future clinical trials, particularly those involving psilocybin or combination therapies.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/head.70031","type":"journal-article","created":{"date-parts":[[2026,1,21]],"date-time":"2026-01-21T13:01:22Z","timestamp":1769000482000},"page":"377-387","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Patient perspectives on research gaps in cluster headache"],"prefix":"10.1111","volume":"66","author":[{"given":"Faraidoon","family":"Haghdoost","sequence":"first","affiliation":[{"name":"The George Institute for Global Health University of New South Wales  Sydney New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Dilara","family":"Bahceci","sequence":"additional","affiliation":[{"name":"The George Institute for Global Health University of New South Wales  Sydney New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Candice","family":"Delcourt","sequence":"additional","affiliation":[{"name":"The George Institute for Global Health University of New South Wales  Sydney New South Wales Australia"},{"name":"Department of Clinical Medicine, Faculty of Medicine, Health and Human Sciences Macquarie University  Sydney New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Tissa","family":"Wijeratne","sequence":"additional","affiliation":[{"name":"Migraine Foundation Western Health  Footscray Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-6433-5887","authenticated-orcid":false,"given":"Rigmor H.","family":"Jensen","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Copenhagen, Rigshospitalet\u2010Glostrup Danish Headache Center  Glostrup Denmark"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Carl","family":"Cincinnato","sequence":"additional","affiliation":[{"name":"Migraine &amp; Headache Australia  Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Susan","family":"Tomlinson","sequence":"additional","affiliation":[{"name":"Department of Neurology St Vincent's Private Hospital  Sydney New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Bob","family":"Wold","sequence":"additional","affiliation":[{"name":"Clusterbusters  USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Vince","family":"Polito","sequence":"additional","affiliation":[{"name":"School of Psychological Sciences Macquarie University  Sydney New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8942-953X","authenticated-orcid":false,"given":"Cheryl","family":"Carcel","sequence":"additional","affiliation":[{"name":"The George Institute for Global Health University of New South Wales  Sydney New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Usman","family":"Ashraf","sequence":"additional","affiliation":[{"name":"Headache Group, Wolfson SPaRC, IoPPN King's College London, Denmark Hill  London UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Bronwyn","family":"Jenkins","sequence":"additional","affiliation":[{"name":"Royal North Shore Hospital  Sydney New South Wales Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-0125-6038","authenticated-orcid":false,"given":"Anja Sofie","family":"Petersen","sequence":"additional","affiliation":[{"name":"Department of Neurology, University of Copenhagen, Rigshospitalet\u2010Glostrup Danish Headache Center  Glostrup Denmark"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jason C.","family":"Ray","sequence":"additional","affiliation":[{"name":"Department of Neurosciences Monash University  Frankston Victoria Australia"},{"name":"Department of Neurology Alfred Health  Melbourne Victoria Australia"},{"name":"Department of Neurology Austin Health  Heidelberg Victoria Australia"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Emmanuelle A. 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