{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,9,3]],"date-time":"2026-09-03T03:07:43Z","timestamp":1788404863612,"version":"build-2803163510"},"reference-count":23,"publisher":"Wiley","issue":"1","license":[{"start":{"date-parts":[[2026,1,22]],"date-time":"2026-01-22T00:00:00Z","timestamp":1769040000000},"content-version":"vor","delay-in-days":21,"URL":"http:\/\/creativecommons.org\/licenses\/by-nc\/4.0\/"},{"start":{"date-parts":[[2026,1,1]],"date-time":"2026-01-01T00:00:00Z","timestamp":1767225600000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100000049","name":"National Institute on Aging","doi-asserted-by":"publisher","award":["1R01AG080093"],"award-info":[{"award-number":["1R01AG080093"]}],"id":[{"id":"10.13039\/100000049","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["alz-journals.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Alzheimer's &amp; Dementia"],"published-print":{"date-parts":[[2026,1]]},"abstract":"Abstract<\/jats:title>\n \n INTRODUCTION<\/jats:title>\n Data sharing among investigators of Alzheimer's disease and related dementias (ADRD) allows for representative datasets, supports reproducibility, and increases rigor. Yet limited evidence on investigators\u2019 practices and experiences precludes solutions that promote optimal practices.<\/jats:p>\n <\/jats:sec>\n \n METHODS<\/jats:title>\n A cross\u2010sectional survey of US\u2010based ADRD investigators with National Institutes of Health awards funded between 2016 and 2019.<\/jats:p>\n <\/jats:sec>\n \n RESULTS<\/jats:title>\n Among 585 respondents (response rate of 64.5%), 62.9% were engaged in data sharing in the previous 5 years. Among data requesters, 61.8% reported that all requests were fulfilled within 6 months. Among those who received requests, 85.1% reported fulfilling all requests. Reasons for declining requests included existing data use agreement requirements, Institutional Review Board standards, and resource limitations. Respondents who shared data reported positive consequences (e.g., developing collaborations) more often than negative (e.g., being \u201cscooped\u201d).<\/jats:p>\n <\/jats:sec>\n \n DISCUSSION<\/jats:title>\n Data sharing behaviors among ADRD researchers are encouraging. Nevertheless, addressing remaining barriers could help avoid the negative consequences of data requests not being fulfilled.<\/jats:p>\n <\/jats:sec>\n \n Highlights<\/jats:title>\n \n \n \n Data sharing is critical to advancing research in ADRD.<\/jats:p>\n <\/jats:list-item>\n \n Investigators are engaged in data sharing through initiating or receiving requests.<\/jats:p>\n <\/jats:list-item>\n \n Most data requests initiated or received by ADRD investigators are fulfilled.<\/jats:p>\n <\/jats:list-item>\n \n Investigators who fulfill requests report positive experiences with sharing data.<\/jats:p>\n <\/jats:list-item>\n \n Delay or decline of requests can result in consequences that impede research.<\/jats:p>\n <\/jats:list-item>\n <\/jats:list>\n <\/jats:p>\n <\/jats:sec>","DOI":"10.1002\/alz.71046","type":"journal-article","created":{"date-parts":[[2026,1,23]],"date-time":"2026-01-23T05:40:43Z","timestamp":1769146843000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":1,"title":["Data sharing practices and experiences among Alzheimer's disease and related dementia researchers"],"prefix":"10.1002","volume":"22","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6081-5231","authenticated-orcid":false,"given":"Jalayne J.","family":"Arias","sequence":"first","affiliation":[{"name":"Department of Health Policy & Behavioral Sciences, School of Public Health Georgia State University Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Karen E.","family":"Nielsen","sequence":"additional","affiliation":[{"name":"Department of Population Health Sciences, School of Public Health Georgia State University Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Dragana","family":"Bolcic\u2010Jankovic","sequence":"additional","affiliation":[{"name":"Center for Survey Research University of Massachusetts Boston Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Luke W","family":"Bonham","sequence":"additional","affiliation":[{"name":"Memory and Aging Center Department of Neurology, Weill Institute for Neurosciences University of California San Francisco California USA"},{"name":"Department of Radiology and Biomedical Imaging University of California San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eric G.","family":"Campbell","sequence":"additional","affiliation":[{"name":"Center for Bioethics and Humanities Anschutz Medical Campus University of Colorado Colorado USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"James J.","family":"Lah","sequence":"additional","affiliation":[{"name":"Department of Neurology Emory Goizueta Brain Health Institute Emory University School of Medicines Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Margaret A.","family":"Manchester","sequence":"additional","affiliation":[{"name":"Department of Health Policy & Behavioral Sciences, School of Public Health Georgia State University Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Catherine E. A.","family":"Scipion","sequence":"additional","affiliation":[{"name":"Department of Health Policy & Behavioral Sciences, School of Public Health Georgia State University Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Yufei","family":"Wang","sequence":"additional","affiliation":[{"name":"Department of Health Policy & Behavioral Sciences, School of Public Health Georgia State University Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Leslie E.","family":"Wolf","sequence":"additional","affiliation":[{"name":"Georgia State University College of Law Georgia State University Atlanta Georgia USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Michelle M.","family":"Mello","sequence":"additional","affiliation":[{"name":"Stanford Law School, Department of Health Policy Stanford University Stanford California USA"},{"name":"Stanford University School of Medicine Stanford University Stanford California USA"},{"name":"Freeman Spogli Institute for International Studies Stanford University Stanford California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jennifer S.","family":"Yokoyama","sequence":"additional","affiliation":[{"name":"Memory and Aging Center Department of Neurology, Weill Institute for Neurosciences University of California San Francisco California USA"},{"name":"Department of Radiology and Biomedical Imaging University of California San Francisco California USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2026,1,22]]},"reference":[{"key":"e_1_2_8_2_1","unstructured":"Donanemab in Early Symptomatic Alzheimer Disease: The TRAILBLAZER\u2010ALZ 2 Randomized Clinical Trial | Dementia and Cognitive Impairment | JAMA | JAMA Network n.d. Accessed May 12 2025.https:\/\/jamanetwork.com\/journals\/jama\/fullarticle\/2807533"},{"key":"e_1_2_8_3_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41582-024-00977-5"},{"key":"e_1_2_8_4_1","doi-asserted-by":"publisher","DOI":"10.1038\/nrneurol.2015.177"},{"key":"e_1_2_8_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jalz.2016.04.001"},{"key":"e_1_2_8_6_1","doi-asserted-by":"publisher","DOI":"10.1016\/S2468\u20102667(21)00249\u20108"},{"key":"e_1_2_8_7_1","doi-asserted-by":"publisher","DOI":"10.1001\/jama.2021.20489"},{"key":"e_1_2_8_8_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.cell.2018.04.008"},{"key":"e_1_2_8_9_1","unstructured":"Accelerating Medicines Partnership\u00ae Program for Alzheimer's Disease (AMP\u00ae AD). National Institute on Aging n.d.http:\/\/www.nia.nih.gov\/research\/amp\u2010ad(accessed September 11 2025)"},{"key":"e_1_2_8_10_1","unstructured":"Alzheimer's Disease AD Workbench (ADWB). ADDI n.d.https:\/\/www.alzheimersdata.org\/ad\u2010workbench(accessed September 11 2025)"},{"key":"e_1_2_8_11_1","doi-asserted-by":"publisher","DOI":"10.1002\/trc2.12226"},{"key":"e_1_2_8_12_1","doi-asserted-by":"publisher","DOI":"10.1371\/journal.pone.0108451"},{"key":"e_1_2_8_13_1","doi-asserted-by":"publisher","DOI":"10.1177\/1556264615594767"},{"key":"e_1_2_8_14_1","unstructured":"The FAIR Guiding Principles for scientific data management and stewardship | Scientific Data n.d. Accessed September 18 2025.https:\/\/www.nature.com\/articles\/sdata201618"},{"key":"e_1_2_8_15_1","doi-asserted-by":"publisher","DOI":"10.1093\/jlb\/lsu032"},{"key":"e_1_2_8_16_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jalz.2018.02.018"},{"key":"e_1_2_8_17_1","doi-asserted-by":"publisher","DOI":"10.1002\/alz.13859"},{"key":"e_1_2_8_18_1","unstructured":"NOT\u2010OD\u201021\u2010013: Final NIH Policy for Data Management and Sharing n.d. 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