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2023-12-13Zeitschriftenartikel DOI: 10.25646/11828
Research on Rare Diseases in Germany - Cancer Predisposition Syndrome Registry
dc.contributor.authorDutzmann, Christina M.
dc.contributor.authorPalmaers, Nathalie E.
dc.contributor.authorMüntnich, Lucas J.
dc.contributor.authorStrüwe, Farina J.
dc.contributor.authorPenkert, Judith
dc.contributor.authorSänger, Birte
dc.contributor.authorHoffmann, Beatrice
dc.contributor.authorKarow, Anja
dc.contributor.authorReimer, Christina
dc.contributor.authorGerasimov, Tanja
dc.contributor.authorNiewisch, Marena R.
dc.contributor.authorKratz, Christian P.
dc.date.accessioned2023-12-13T12:46:39Z
dc.date.available2023-12-13T12:46:39Z
dc.date.issued2023-12-13none
dc.identifier.urihttp://edoc.rki.de/176904/11427
dc.description.abstractBackground: Cancer predisposition syndromes (CPS) are rare diseases that are associated with an increased risk of cancer due to genetic alterations. At least 8 % of all cases of childhood cancer are attributable to CPS. The CPS registry was launched in 2017 to learn more about CPS and to improve the care to those afflicted by these diseases. Methods: This is an internationally networked registry with associated accompanying studies that investigate cancer risks and spectra, the possibilities of cancer prevention, early detection and therapy. Results: For several of these syndromes, new insights into the cancer risks and cancer types as well as factors modifying cancer risk have been gained. In addition, experimental, psycho-oncological, preclinical and clinical studies were initiated. Conclusions: The CPS registry is an example of how progress can be made within a short period of time to the benefit of individuals with rare diseases through systematic data collection and research.eng
dc.language.isoengnone
dc.publisherRobert Koch-Institut
dc.rights(CC BY 3.0 DE) Namensnennung 3.0 Deutschlandger
dc.rights.urihttp://creativecommons.org/licenses/by/3.0/de/
dc.subjectCancer Predispositioneng
dc.subjectPreventioneng
dc.subjectSurveillanceeng
dc.subjectLi-Fraumeni-Syndromeeng
dc.subjectRare Diseaseseng
dc.subjectChildreneng
dc.subject.ddc610 Medizin und Gesundheitnone
dc.titleResearch on Rare Diseases in Germany - Cancer Predisposition Syndrome Registrynone
dc.typearticle
dc.identifier.urnurn:nbn:de:0257-176904/11427-9
dc.identifier.doi10.25646/11828
local.edoc.container-titleJournal of Health Monitoringnone
local.edoc.pages7none
local.edoc.type-nameZeitschriftenartikel
local.edoc.container-typeperiodical
local.edoc.container-type-nameZeitschrift
local.edoc.container-issue4none
local.edoc.container-firstpage17none
local.edoc.container-lastpage23none

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