{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,16]],"date-time":"2026-01-16T19:15:56Z","timestamp":1768590956872,"version":"3.49.0"},"reference-count":25,"publisher":"Springer Science and Business Media LLC","issue":"6","license":[{"start":{"date-parts":[[2025,1,21]],"date-time":"2025-01-21T00:00:00Z","timestamp":1737417600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2025,1,21]],"date-time":"2025-01-21T00:00:00Z","timestamp":1737417600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"National Cancer Institute"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Cancer Causes Control"],"published-print":{"date-parts":[[2025,6]]},"abstract":"<jats:title>Abstract<\/jats:title>\n          <jats:sec>\n            <jats:title>Purpose<\/jats:title>\n            <jats:p>Rare cancers are defined as those for which there are less than 15 cases per 100,000 in the population annually. While much progress in detection and treatment has been made over the past decade for many rare cancers, less progress has been made in understanding survivorship needs. The objective of this study was to characterize the National Institutes of Health (NIH) cancer survivorship grant portfolio focused on rare cancers and to identify gaps specific to this area of science.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Methods<\/jats:title>\n            <jats:p>Newly awarded grants focused on rare cancers in the NIH cancer survivorship research portfolio from Fiscal Year (FY) 2017 to FY2023 were identified. Grant characteristics were abstracted and described. In addition, the number of grants for each rare cancer type was mapped to current Surveillance, Epidemiology, and End Results program incidence and relative survival rates.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Results<\/jats:title>\n            <jats:p>A total of 93 survivorship grants focused on one or multiple rare cancer types were funded from FY2017 to FY2023. Approximately 85% of these grants investigated one of four cancer types: leukemia, head &amp; neck, ovarian and brain. Few grants focused on other rare cancer types, such as multiple myeloma (n\u2009=\u20095), testicular cancer (n\u2009=\u20093), rectal cancer (n\u2009=\u20091), thyroid cancer (n\u2009=\u20091), and cervical cancer (n\u2009=\u20090). About half of the grants (50.5%) were observational studies; 34.4% focused explicitly on pediatric cancer survivors.<\/jats:p>\n          <\/jats:sec>\n          <jats:sec>\n            <jats:title>Conclusions<\/jats:title>\n            <jats:p>Survivorship research for many rare cancer types is limited. This paucity of research is a barrier to the identification of survivorship needs and the development of interventions to address these needs.<\/jats:p>\n          <\/jats:sec>","DOI":"10.1007\/s10552-025-01959-8","type":"journal-article","created":{"date-parts":[[2025,1,21]],"date-time":"2025-01-21T16:06:47Z","timestamp":1737475607000},"page":"587-594","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":2,"title":["Rare cancer survivorship research funding at the National Institutes of Health (NIH), 2017 to 2023"],"prefix":"10.1007","volume":"36","author":[{"given":"Lisa","family":"Gallicchio","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michelle","family":"Mollica","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Gina","family":"Tesauro","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Michelle","family":"Doose","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jennifer L.","family":"Guida","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Molly E.","family":"Maher","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Emily","family":"Tonorezos","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"297","published-online":{"date-parts":[[2025,1,21]]},"reference":[{"issue":"1","key":"1959_CR1","doi-asserted-by":"publisher","first-page":"93","DOI":"10.1517\/21678707.2016.1120663","volume":"4","author":"D Bradford","year":"2019","unstructured":"Bradford D, Reilly KM, Widemann BC, Sandler A, Kummar S (2019) Developing therapies for rare tumors: opportunities, challenges and progress. Expert Opin Orphan Drugs 4(1):93\u2013103","journal-title":"Expert Opin Orphan Drugs"},{"issue":"2","key":"1959_CR2","doi-asserted-by":"publisher","first-page":"106","DOI":"10.1093\/oncolo\/oyad285","volume":"29","author":"C Vivelo","year":"2024","unstructured":"Vivelo C, Reilly KM, Widemann BC, Wedekind MF, Painter C, O\u2019Neill AF et al (2024) The landscape of US and global rare tumor research programs: a systematic review. Oncologist 29(2):106\u2013116","journal-title":"Oncologist"},{"key":"1959_CR3","unstructured":"National Cancer Institute (2023) Definition: Rare cancer. https:\/\/www.cancer.gov\/search\/results?swKeyword=rare+cancer"},{"issue":"11","key":"1959_CR4","doi-asserted-by":"publisher","first-page":"1508","DOI":"10.1158\/1055-9965.EPI-23-0589","volume":"32","author":"G Forjaz","year":"2023","unstructured":"Forjaz G, Ries L, Devasia TP, Flynn G, Ruhl J, Mariotto AB (2023) Long-term cancer survival trends by updated summary stage. Cancer Epidemiol Biomarkers Prev 32(11):1508\u20131517","journal-title":"Cancer Epidemiol Biomarkers Prev"},{"issue":"2","key":"1959_CR5","doi-asserted-by":"publisher","first-page":"315","DOI":"10.1038\/s41416-020-01038-6","volume":"124","author":"VA Zavala","year":"2021","unstructured":"Zavala VA, Bracci PM, Carethers JM, Carvajal-Carmona L, Coggins NB, Cruz-Correa MR et al (2021) Cancer health disparities in racial\/ethnic minorities in the United States. Br J Cancer 124(2):315\u2013332","journal-title":"Br J Cancer"},{"issue":"5","key":"1959_CR6","doi-asserted-by":"publisher","first-page":"1443","DOI":"10.1007\/s11764-023-01414-0","volume":"18","author":"MA Mollica","year":"2024","unstructured":"Mollica MA, Tesauro G, Gallicchio L, Guida J, Maher ME, Tonorezos E (2024) Survivorship science at the National Institutes of Health 2017\u20132021. J Cancer Surviv 18(5):1443\u20131452","journal-title":"J Cancer Surviv"},{"key":"#cr-split#-1959_CR7.1","unstructured":"Surveillance Research Program, National Cancer Institute (2023) SEER*Explorer: an interactive website for SEER cancer statistics [Internet]. 2023. [updated: 2023 Nov 16"},{"key":"#cr-split#-1959_CR7.2","unstructured":"cited 2024 Feb 26.]. https:\/\/seer.cancer.gov\/statistics-network\/explorer\/. Data source(s): SEER Incidence Data, November 2022 Submission (1975-2020), SEER 22 registries"},{"key":"#cr-split#-1959_CR8.1","unstructured":"Surveillance Research Program, National Cancer Institute (2023) SEER*Explorer: An interactive website for SEER cancer statistics [Internet]. 2023. [updated: 2023 Nov 16"},{"key":"#cr-split#-1959_CR8.2","unstructured":"cited 2024 Feb 26.] Available from: https:\/\/seer.cancer.gov\/statistics-network\/explorer\/. Data source(s): SEER Incidence Data, November 2022 Submission (1975-2020), SEER 22 registries (excluding Illinois and Massachusetts). Expected Survival Life Tables by Socio-Economic Standards"},{"issue":"6","key":"1959_CR9","doi-asserted-by":"publisher","first-page":"611","DOI":"10.1200\/JCO.2015.64.3809","volume":"34","author":"CD Runowicz","year":"2016","unstructured":"Runowicz CD, Leach CR, Henry NL, Henry KS, Mackey HT, Cowens-Alvarado RL et al (2016) American Cancer Society\/American Society of Clinical Oncology breast cancer survivorship care guideline. J Clin Oncol 34(6):611\u2013635","journal-title":"J Clin Oncol"},{"issue":"6","key":"1959_CR10","doi-asserted-by":"publisher","first-page":"428","DOI":"10.3322\/caac.21286","volume":"65","author":"K El-Shami","year":"2015","unstructured":"El-Shami K, Oeffinger KC, Erb NL, Willis A, Bretsch JK, Pratt-Chapman ML et al (2015) American Cancer Society colorectal cancer survivorship care guidelines. CA Cancer J Clin 65(6):428\u2013455","journal-title":"CA Cancer J Clin"},{"issue":"33","key":"1959_CR11","doi-asserted-by":"publisher","first-page":"2589","DOI":"10.1080\/14796694.2024.2387526","volume":"20","author":"R Dave","year":"2024","unstructured":"Dave R, Friedman S, Miller-Sonet E, Moore T, Peterson E, Fawzy Doran J et al (2024) Identifying and addressing the needs of caregivers of patients with cancer: evidence on interventions and the role of patient advocacy groups. Future Oncol 20(33):2589\u20132602","journal-title":"Future Oncol"},{"issue":"1","key":"1959_CR12","doi-asserted-by":"publisher","first-page":"309","DOI":"10.1111\/scs.12463","volume":"32","author":"S Nemati","year":"2018","unstructured":"Nemati S, Rassouli M, Ilkhani M, Baghestani AR (2018) Perceptions of family caregivers of cancer patients about the challenges of caregiving: a qualitative study. Scand J Caring Sci 32(1):309\u2013316","journal-title":"Scand J Caring Sci"},{"issue":"9 Suppl","key":"1959_CR13","doi-asserted-by":"publisher","first-page":"23","DOI":"10.1097\/01.NAJ.0000336406.45248.4c","volume":"108","author":"R Schulz","year":"2008","unstructured":"Schulz R, Sherwood PR (2008) Physical and mental health effects of family caregiving. Am J Nurs 108(9 Suppl):23\u201327","journal-title":"Am J Nurs"},{"key":"1959_CR14","volume-title":"Cancer Facts & Figures 2024","author":"American Cancer Society","year":"2024","unstructured":"American Cancer Society (2024) Cancer Facts & Figures 2024. American Cancer Society, Atlanta"},{"key":"1959_CR15","doi-asserted-by":"publisher","DOI":"10.1093\/jnci\/djae250","author":"LL Page","year":"2024","unstructured":"Page LL, Devasia TP, Mariotto A, Gallicchio L, Mollica MA, Tonorezos E (2024) Prevalence of cancer survivors diagnosed during adolescence and young adulthood in the United States. J Natl Cancer Inst. https:\/\/doi.org\/10.1093\/jnci\/djae250","journal-title":"J Natl Cancer Inst"},{"issue":"4","key":"1959_CR16","doi-asserted-by":"publisher","first-page":"653","DOI":"10.1158\/1055-9965.EPI-14-1418","volume":"24","author":"SM Phillips","year":"2015","unstructured":"Phillips SM, Padgett LS, Leisenring WM, Stratton KK, Bishop K, Krull KR et al (2015) Survivors of childhood cancer in the United States: prevalence and burden of morbidity. Cancer Epidemiol Biomarkers Prev 24(4):653\u2013663","journal-title":"Cancer Epidemiol Biomarkers Prev"},{"issue":"12","key":"1959_CR17","doi-asserted-by":"publisher","first-page":"1218","DOI":"10.1200\/JCO.2013.51.1055","volume":"32","author":"GT Armstrong","year":"2014","unstructured":"Armstrong GT, Kawashima T, Leisenring W, Stratton K, Stovall M, Hudson MM et al (2014) Aging and risk of severe, disabling, life-threatening, and fatal events in the childhood cancer survivor study. J Clin Oncol 32(12):1218\u20131227","journal-title":"J Clin Oncol"},{"issue":"12","key":"1959_CR18","doi-asserted-by":"publisher","first-page":"1590","DOI":"10.1016\/S1470-2045(18)30537-0","volume":"19","author":"TM Gibson","year":"2018","unstructured":"Gibson TM, Mostoufi-Moab S, Stratton KL, Leisenring WM, Barnea D, Chow EJ et al (2018) Temporal patterns in the risk of chronic health conditions in survivors of childhood cancer diagnosed 1970\u201399: a report from the Childhood Cancer Survivor Study cohort. Lancet Oncol 19(12):1590\u20131601","journal-title":"Lancet Oncol"},{"key":"1959_CR19","unstructured":"National Cancer Institute (2023) Childhood Cancer STAR (Survivorship, Treatment, Access, Research) Act (Public Law No: 115\u2013180) and the Childhood Cancer STAR Reauthorization Act (Public Law No: 117\u2013350). https:\/\/www.cancer.gov\/about-nci\/legislative\/recent-public-laws\/star-act"},{"key":"1959_CR20","unstructured":"National Institutes of Health (2019) NIH Exploratory\/Developmental Research Grant Award (R21). https:\/\/grants.nih.gov\/grants\/funding\/r21.htm"},{"issue":"7","key":"1959_CR21","doi-asserted-by":"publisher","first-page":"1345","DOI":"10.1038\/s41591-022-01881-5","volume":"28","author":"DS Singer","year":"2022","unstructured":"Singer DS (2022) A new phase of the Cancer Moonshot to end cancer as we know it. Nat Med 28(7):1345\u20131347","journal-title":"Nat Med"},{"key":"1959_CR22","unstructured":"National Cancer Institute (2023) National Cancer Plan. https:\/\/nationalcancerplan.cancer.gov\/national-cancer-plan.pdf."},{"key":"1959_CR23","unstructured":"European Society for Medical Oncology (2024) Rare cancers in Europe. https:\/\/www.esmo.org\/policy\/rare-cancers-working-group\/rare-cancers-in-europe"}],"container-title":["Cancer Causes &amp; Control"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s10552-025-01959-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s10552-025-01959-8\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s10552-025-01959-8.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,5,22]],"date-time":"2025-05-22T08:44:11Z","timestamp":1747903451000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s10552-025-01959-8"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2025,1,21]]},"references-count":25,"journal-issue":{"issue":"6","published-print":{"date-parts":[[2025,6]]}},"alternative-id":["1959"],"URL":"https:\/\/doi.org\/10.1007\/s10552-025-01959-8","relation":{},"ISSN":["0957-5243","1573-7225"],"issn-type":[{"value":"0957-5243","type":"print"},{"value":"1573-7225","type":"electronic"}],"subject":[],"published":{"date-parts":[[2025,1,21]]},"assertion":[{"value":"22 April 2024","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"2 January 2025","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"21 January 2025","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The authors have no relevant financial or non-financial interests to disclose.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"Not applicable.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}},{"value":"Not applicable.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Informed consent"}}]}}