{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,16]],"date-time":"2026-09-16T06:06:18Z","timestamp":1789538778766,"version":"build-2803163510"},"reference-count":23,"publisher":"Oxford University Press (OUP)","issue":"5","license":[{"start":{"date-parts":[[2026,6,2]],"date-time":"2026-06-02T00:00:00Z","timestamp":1780358400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/academic.oup.com\/pages\/standard-publication-reuse-rights"}],"funder":[{"name":"Glioblastoma Research Organization"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2026,10,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Despite decades of epidemiologic research, no glioblastoma risk factors have been identified that explain substantial risk. Prior studies often rely on single- or multi-center recruitment, which is costly and limits generalizability. To address this and increase the diversity of glioblastoma patients in epidemiological research, we have launched the Key LARGO study (NCT06625684, Key Longitudinal Associations with Risk and Glioblastoma Outcomes), an ongoing observational study of glioblastoma patients and their caregivers.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Key LARGO uses web-based enrollment and at-home biospecimen collection via mailed Tasso+ kits for self-collection of blood and serum. Participants complete a detailed, online survey (available in English or Spanish) on life history and health-related quality of life. Primary caregivers are enrolled to help report patient outcomes, including vital status.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Recruitment began on December 10, 2024. As of February 28, 2026, 114 patients and 52 caregivers have consented. Of these, 96 consented to blood collection, 73 received kits, and 52 have returned samples. Eighty-two participants completed the full study survey. Participants were 53% male, with a median age of 54 years (range 24-69) at the time of diagnosis. Diagnoses occurred between 2007 and 2025. Most (96%) identified as White. Seven percent identified as Hispanic or Latino. Blood collection kits have been returned from the United States, Canada, Croatia, Italy, Indonesia, and the United Kingdom.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>Key LARGO supports the feasibility of web-based recruitment and remote biospecimen collection in glioblastoma research. The current cohort is best suited for descriptive and hypothesis-generating analyses pending clinical\/molecular validation and targeted recruitment.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/nop\/npag052","type":"journal-article","created":{"date-parts":[[2026,5,27]],"date-time":"2026-05-27T11:43:51Z","timestamp":1779882231000},"page":"900-906","source":"Crossref","is-referenced-by-count":0,"title":["The Key LARGO study: Building an international resource for glioblastoma epidemiology"],"prefix":"10.1093","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7396-3479","authenticated-orcid":false,"given":"Courtney E","family":"Wimberly","sequence":"first","affiliation":[{"name":"Department of Neurosurgery, Duke University School of Medicine , Durham, North Carolina,","place":["USA"]},{"name":"The Preston Robert Tisch Brain Tumor Center, Duke University School of Medicine , Durham, North Carolina,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-3957-1164","authenticated-orcid":false,"given":"Michael C","family":"Brown","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Duke University School of Medicine , Durham, North Carolina,","place":["USA"]},{"name":"The Preston Robert Tisch Brain Tumor Center, Duke University School of Medicine , Durham, North Carolina,","place":["USA"]},{"name":"Duke Cancer Institute, Duke University Medical Center , Durham, North Carolina,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5879-9981","authenticated-orcid":false,"given":"Kyle M","family":"Walsh","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Duke University School of Medicine , Durham, North Carolina,","place":["USA"]},{"name":"The Preston Robert Tisch Brain Tumor Center, Duke University School of Medicine , Durham, North Carolina,","place":["USA"]},{"name":"Duke Cancer Institute, Duke University Medical Center , Durham, North Carolina,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3469-7558","authenticated-orcid":false,"given":"Quinn T","family":"Ostrom","sequence":"additional","affiliation":[{"name":"Department of Neurosurgery, Duke University School of Medicine , Durham, North Carolina,","place":["USA"]},{"name":"The Preston Robert Tisch Brain Tumor Center, Duke University School of Medicine , Durham, North Carolina,","place":["USA"]},{"name":"Duke Cancer Institute, Duke University Medical Center , Durham, North Carolina,","place":["USA"]}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"286","published-online":{"date-parts":[[2026,6,2]]},"reference":[{"key":"2026091601513228800_npag052-B1","doi-asserted-by":"publisher","first-page":"iv1","DOI":"10.1093\/neuonc\/noaf194","article-title":"CBTRUS statistical report: primary brain and other central nervous system tumors diagnosed in the United States in 2018-2022","volume":"27","author":"Price","year":"2025","journal-title":"Neuro Oncol"},{"key":"2026091601513228800_npag052-B2","doi-asserted-by":"publisher","first-page":"1357","DOI":"10.1093\/neuonc\/noz123","article-title":"Risk factors for childhood and adult primary brain tumors","volume":"21","author":"Ostrom","year":"2019","journal-title":"Neuro Oncol"},{"key":"2026091601513228800_npag052-B3","doi-asserted-by":"publisher","first-page":"896","DOI":"10.1093\/neuonc\/nou087","article-title":"The epidemiology of glioma in adults: a \u201cstate of the science\u201d review","volume":"16","author":"Ostrom","year":"2014","journal-title":"Neuro Oncol"},{"key":"2026091601513228800_npag052-B4","doi-asserted-by":"publisher","first-page":"581","DOI":"10.1093\/oxfordjournals.aje.a009154","article-title":"Familial and personal medical history of cancer and nervous system conditions among adults with glioma and controls","volume":"145","author":"Wrensch","year":"1997","journal-title":"Am J Epidemiol"},{"key":"2026091601513228800_npag052-B5","doi-asserted-by":"publisher","first-page":"282","DOI":"10.1158\/1055-9965.EPI-15-0847","article-title":"Approaching a scientific consensus on the association between allergies and glioma risk: a report from the Glioma International Case-Control Study","volume":"25","author":"Amirian","year":"2016","journal-title":"Cancer Epidemiol Biomarkers Prev"},{"key":"2026091601513228800_npag052-B6","doi-asserted-by":"publisher","first-page":"3875","DOI":"10.1007\/s13277-013-1514-4","article-title":"Allergic conditions reduce the risk of glioma: a meta-analysis based on 128,936 subjects","volume":"35","author":"Zhao","year":"2014","journal-title":"Tumour Biol"},{"key":"2026091601513228800_npag052-B7","doi-asserted-by":"publisher","first-page":"545","DOI":"10.1093\/jnci\/djae265","article-title":"Association of immunoglobulin E levels with glioma risk and survival","volume":"117","author":"Guerra","year":"2025","journal-title":"J Natl Cancer Inst"},{"key":"2026091601513228800_npag052-B8","doi-asserted-by":"crossref","first-page":"2342","DOI":"10.1002\/(SICI)1097-0142(20000515)88:10<2342::AID-CNCR19>3.0.CO;2-X","article-title":"Discrepancies in diagnoses of neuroepithelial neoplasms: the San Francisco Bay Area Adult Glioma Study","volume":"88","author":"Aldape","year":"2000","journal-title":"Cancer"},{"key":"2026091601513228800_npag052-B9","doi-asserted-by":"publisher","first-page":"85","DOI":"10.1093\/aje\/kwv235","article-title":"The Glioma International Case-Control study: a report from the Genetic Epidemiology of Glioma International Consortium","volume":"183","author":"Amirian","year":"2016","journal-title":"Am J Epidemiol"},{"key":"2026091601513228800_npag052-B10","doi-asserted-by":"publisher","first-page":"143","DOI":"10.1093\/nop\/npz049","article-title":"Social media partnerships with patient organizations for neuro-oncology patient recruitment","volume":"7","author":"Claus","year":"2020","journal-title":"Neurooncol Pract"},{"key":"2026091601513228800_npag052-B11","doi-asserted-by":"publisher","first-page":"viii143","DOI":"10.1093\/neuonc\/noae165.0560","article-title":"Epid-24. Optimizing patient recruitment for brain tumor studies: leveraging the power of google ads to connect with affected families","volume":"26","author":"Kakaizada","year":"2024","journal-title":"Neuro Oncol"},{"key":"2026091601513228800_npag052-B12","doi-asserted-by":"publisher","first-page":"103208","DOI":"10.1016\/j.jbi.2019.103208","article-title":"The REDCap consortium: building an international community of software platform partners","volume":"95","author":"Harris","year":"2019","journal-title":"J Biomed Inform"},{"key":"2026091601513228800_npag052-B13","doi-asserted-by":"publisher","first-page":"377","DOI":"10.1016\/j.jbi.2008.08.010","article-title":"Research electronic data capture (REDCap)\u2014a metadata-driven methodology and workflow process for providing translational research informatics support","volume":"42","author":"Harris","year":"2009","journal-title":"J Biomed Inform"},{"key":"2026091601513228800_npag052-B14","doi-asserted-by":"publisher","first-page":"1149","DOI":"10.1093\/jamia\/ocaf073","article-title":"Supporting rapid innovation in research data capture and management: the REDCap external module framework","volume":"32","author":"Cheng","year":"2025","journal-title":"J Am Med Inform Assoc"},{"key":"2026091601513228800_npag052-B15","doi-asserted-by":"publisher","first-page":"596","DOI":"10.1093\/neuonc\/noad242","article-title":"Defining interventions and metrics to improve diversity in CNS clinical trial participation: a SNO and RANO effort","volume":"26","author":"Budhu","year":"2024","journal-title":"Neuro Oncol"},{"key":"2026091601513228800_npag052-B16","doi-asserted-by":"publisher","first-page":"1341","DOI":"10.1093\/neuonc\/noac011","article-title":"A population study of clinical trial accrual for women and minorities in neuro-oncology following the NIH Revitalization Act","volume":"24","author":"Reihl","year":"2022","journal-title":"Neuro Oncol"},{"key":"2026091601513228800_npag052-B17","doi-asserted-by":"publisher","first-page":"1254","DOI":"10.1001\/jamaoncol.2018.1789","article-title":"Adult glioma incidence and survival by race or ethnicity in the United States from 2000 to 2014","volume":"4","author":"Ostrom","year":"2018","journal-title":"JAMA Oncol"},{"key":"2026091601513228800_npag052-B18","doi-asserted-by":"publisher","first-page":"e290","DOI":"10.2196\/jmir.7071","article-title":"The use of facebook in recruiting participants for health research purposes: a systematic review","volume":"19","author":"Whitaker","year":"2017","journal-title":"J Med Internet Res"},{"key":"2026091601513228800_npag052-B19","doi-asserted-by":"publisher","first-page":"e286","DOI":"10.2196\/jmir.5698","article-title":"The use of social media in recruitment for medical research studies: a scoping review","volume":"18","author":"Topolovec-Vranic","year":"2016","journal-title":"J Med Internet Res"},{"key":"2026091601513228800_npag052-B20","doi-asserted-by":"publisher","first-page":"793","DOI":"10.1007\/s00520-008-0551-9","article-title":"Distress and quality of life in primary high-grade brain tumor patients","volume":"17","author":"Kvale","year":"2009","journal-title":"Support Care Cancer"},{"key":"2026091601513228800_npag052-B21","doi-asserted-by":"publisher","first-page":"280","DOI":"10.4021\/wjon585w","article-title":"Quality of life in patients with primary and metastatic brain tumors in the literature as assessed by the FACT-Br","volume":"3","author":"Chiu","year":"2012","journal-title":"World J Oncol"},{"key":"2026091601513228800_npag052-B22","doi-asserted-by":"publisher","first-page":"499","DOI":"10.1007\/s11060-014-1574-3","article-title":"Impact of health-related quality of life and fatigue on survival of recurrent high-grade glioma patients","volume":"120","author":"Peters","year":"2014","journal-title":"J Neurooncol"},{"key":"2026091601513228800_npag052-B23","doi-asserted-by":"publisher","first-page":"187","DOI":"10.1016\/j.prro.2013.07.014","article-title":"Can electronic web-based technology improve quality of life data collection? Analysis of Radiation Therapy Oncology Group 0828","volume":"4","author":"Movsas","year":"2014","journal-title":"Pract Radiat Oncol"}],"container-title":["Neuro-Oncology Practice"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/academic.oup.com\/nop\/advance-article-pdf\/doi\/10.1093\/nop\/npag052\/68430501\/npag052.pdf","content-type":"application\/pdf","content-version":"am","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/nop\/article-pdf\/13\/5\/900\/68430501\/npag052.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"syndication"},{"URL":"https:\/\/academic.oup.com\/nop\/article-pdf\/13\/5\/900\/68430501\/npag052.pdf","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2026,9,16]],"date-time":"2026-09-16T05:51:38Z","timestamp":1789537898000},"score":1,"resource":{"primary":{"URL":"https:\/\/academic.oup.com\/nop\/article\/13\/5\/900\/8697929"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2026,6,2]]},"references-count":23,"journal-issue":{"issue":"5","published-online":{"date-parts":[[2026,6,2]]},"published-print":{"date-parts":[[2026,10,1]]}},"URL":"https:\/\/doi.org\/10.1093\/nop\/npag052","relation":{},"ISSN":["2054-2577","2054-2585"],"issn-type":[{"value":"2054-2577","type":"print"},{"value":"2054-2585","type":"electronic"}],"subject":[],"published-other":{"date-parts":[[2026,10]]},"published":{"date-parts":[[2026,6,2]]}}}