{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,14]],"date-time":"2026-07-14T06:06:28Z","timestamp":1784009188697,"version":"3.55.0"},"reference-count":38,"publisher":"Oxford University Press (OUP)","issue":"4","funder":[{"name":"The Natural History Study","award":["1ZIABC011786-03"],"award-info":[{"award-number":["1ZIABC011786-03"]}]},{"DOI":"10.13039\/100000054","name":"National Cancer Institute","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100000054","id-type":"DOI","asserted-by":"publisher"}]},{"name":"National Institute of Health"}],"content-domain":{"domain":[],"crossmark-restriction":false},"short-container-title":[],"published-print":{"date-parts":[[2026,8,1]]},"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Background<\/jats:title>\n                    <jats:p>Primary central nervous system tumors (PCNST) are rare, understudied tumors for which knowledge of their clinical course, biology, physical, and psychological impact is limited. The National Cancer Institute\u2019s Neuro-Oncology Branch Natural History Study was developed to better understand the long-term disease course and outcomes experienced by these patients.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Past medical histories, tumor tissue (if available), and patient-reported outcomes assessing symptom burden, general health status, anxiety, depression, and perceived cognitive deficits were collected at study enrollment. Sociodemographic, clinical, molecular, and patient-reported outcome data were analyzed descriptively.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Among the first 1000 participants, 796 had primary brain tumors (PBT) and 92 had primary spine tumors (PST); 88 were excluded. The cohort was predominantly male (56%), White (81%), and non-Hispanic (89%). Based on advanced molecular testing at enrollment, 190 (21%) patients had a change in diagnosis or subclassification since their initial diagnosis. Meningioma cases reported family brain tumor history more frequently than others. Most PBTs were diagnosed within 6 months of symptoms, while most PSTs were diagnosed \u22651 year after. Patients with PBT and PST reported an average of 10 symptoms, with 4 and 5 symptoms rated as moderate\/severe, respectively. Nearly half of PBT participants reported anxiety or depression (46%) and difficulty with usual activities (48%). PST participants reported higher functional impairment and worse general health status.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>These findings underscore the substantial burden of PCNSTs and highlight the value of longitudinal, tumor-agnostic data in generating real-world insights into the disease trajectories of these rare and heterogeneous tumors to inform clinical research.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1093\/nop\/npag026","type":"journal-article","created":{"date-parts":[[2026,3,24]],"date-time":"2026-03-24T12:35:15Z","timestamp":1774355715000},"page":"743-758","source":"Crossref","is-referenced-by-count":0,"title":["Natural history study of adults with primary central nervous system tumors: Initial results for first 1000 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