Bedeutung von Krebsregistern für die Versorgungsforschung

Klinkhammer‐Schalke, Monika; Gerken, Michael; Barlag, Hagen; Hofstädter, Ferdinand; Benz, Stefan

doi:10.1007/s00761-016-0181-7

Cited by 6 publications

(5 citation statements)

References 10 publications

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“…Furthermore, Klinkhammer-Schalke et al argue that longterm and real-life data from registries could not only serve for improving guidelines (such as the German S3 one on colorectal cancer), as shown in Figure 3, but also outweigh results from randomized clinical trials with their rather controlled setups [24]. This hypothesis would need to be proven, here, in order to move on with related therapy assessments: be it for drugs, surgeries, technology or else.…”

Section: Discussion and Outlook On Future Challengesmentioning

confidence: 99%

“…Eventually, stakeholder integration remains a large issue. If patients and their relatives as well as clinical, political or drugapproving executives can easily find results, one overall target of Germany's national cancer plan will be achieved [24].…”

Section: Discussion and Outlook On Future Challengesmentioning

confidence: 99%

“…The central aim of the bill is to merge the data from the cancer registries of the states and thus further improve oncology care. In consequence, this may speed up the ongoing process of extending cancer registries from an epidemiological focus to a clinical: For clinical reasons, the whole case history from diagnosis on, via individual therapy steps to aftercare, recurrences and survival/ death shall be collected [24]. In the federal state of Rhineland-Palatinate for instance, hospitals, pathologists, medical or dental practitioners and certified cancer centers are mandated and rewarded to submit corresponding data (this does not include digital radiological images, however) to a web-based notification entry portal [10] of its state cancer registry KR RLP.…”

Section: A Cancer Registry Datamentioning

confidence: 99%

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Towards Distributed Healthcare Systems – Virtual Data Pooling Between Cancer Registries as Backbone of Care and Research

Appenzeller

Bartholomäus

Breitschwerdt

et al. 2021

2021 IEEE/ACS 18th International Conference on Computer Systems and Applications (AICCSA)

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Cancer registries offer a systematic approach for the collection, storage, and management of data on persons with cancer and related diseases. Much hope in research and healthcare in general is depending on such register-based analyses in order to comprehensively consider the features of a highly diverse population. Next to the data collection the cancer registries are responsible for data protection. To fulfill legal regulations, access to data has to be controlled in a strict way leading to sometimes bureaucratic and slow processes. The situation is especially complicated in Germany, since cancer data is distributed over numerous federal cancer registries. A research team has to negotiate a separate contract with each cancer registry, if a nationwide data evaluation has to be performed.In a joint effort of cancer registries, technical, medical, and economical experts we propose a different solution for cooperative data processing. Our approach aims for combining data in a virtual pool based on the selection criteria of individual requests from researchers. To achieve our goal, we adapt the Fraunhofer Medical Data Space as enabling technology. The architecture we propose will allow us to pool data of multiple partners regulated by data access policies. In doing so, each of the data sources can introduce its own rules and specifications on how data is used. Additionally, we add a digital consent management that will allow individual patients to decide how their data is used. Finally, we show the high potential of the cooperative analysis of distributed cancer data supported by the proposed solution in our approach.

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Section: Discussion and Outlook On Future Challengesmentioning

confidence: 99%

Section: Discussion and Outlook On Future Challengesmentioning

confidence: 99%

Section: A Cancer Registry Datamentioning

confidence: 99%

See 1 more Smart Citation

Towards Distributed Healthcare Systems – Virtual Data Pooling Between Cancer Registries as Backbone of Care and Research

Appenzeller

Bartholomäus

Breitschwerdt

et al. 2021

2021 IEEE/ACS 18th International Conference on Computer Systems and Applications (AICCSA)

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“…Such topics can currently not, or only partially, be derived from epidemiological [ 4 ] or clinical cancer registries [ 15 ] because these registries have a different main objective. RWE studies, as described in this article, are of course not completely new but rather based on established observational study methods such as cohort studies [ 16 ], registry studies [ 25 ] and population studies [ 20 ].…”

Section: Benefits Of Establishing An Oncology Rwe Networkmentioning

confidence: 99%

Real-world evidence research based on big data

2018

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BackgroundIn recent years there has been an increasing, partially also critical interest in understanding the potential benefits of generating real-world evidence (RWE) in medicine.ObjectivesThe benefits and limitations of RWE in the context of randomized controlled trials (RCTs) are described along with a view on how they may complement each other as partners in the generation of evidence for clinical oncology. Moreover, challenges and success factors in building an effective RWE network of cooperating cancer centers are analyzed and discussed.Material and methodsThis article is based on a selective literature search (predominantly 2015–2017) combined with our practical experience to date in establishing European oncology RWE networks.ResultsRWE studies can be highly valuable and complementary to RCTs due to their high external validity. If cancer centers successfully address the various challenges in the establishment of an effective RWE study network and in the consequent execution of studies, they may efficiently generate high-quality research findings on treatment effectiveness and safety. Concerns pertaining to data privacy are of utmost importance and discussed accordingly. Securing data completeness, accuracy, and a common data structure on routinely collected disease and treatment-related data of patients with cancer is a challenging task that requires high engagement of all participants in the process.ConclusionBased on the discussed prerequisites, the analysis of comprehensive and complex real-world data in the context of a RWE study network represents an important and promising complementary partner to RCTs. This enables research into the general quality of cancer care and can permit comparative effectiveness studies across partner centers. Moreover, it will provide insights into a broader optimization of cancer care, refined therapeutic strategies for patient subgroups as well as avenues for further research in oncology.

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“…Von epidemiologischen Registern zu klinisch-epidemiologischen RegisternDie flächendeckende und vollzählige Erhebung bevölkerungsbezogener Registerdaten von Krebserkrankungen und deren Behandlung ist ein relevanter Pfeiler der Planung und Verbesserung der onkologischen Versorgung[3,15]. In diesem Sinne sieht das Bundesgesetz zur Registrierung von Krebserkrankungen (KRG) vor, dass die Schweizer Krebsregister neu auch Daten zur Behandlung und dem Krankheitsverlauf registrieren müssen.…”

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Krebs in der Schweiz

2017

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Hintergrund Immer mehr Personen erkranken an Krebs. Deren Überlebenschancen nehmen aufgrund verbesserter Diagnostik und Therapie zu. Die betroffenen Personen haben besondere Bedürfnisse, die sich weit über den Abschluss der Therapie hinaus erstrecken. In der Folge wird die Nachsorge der sog. "cancer survivors" wichtiger. Die Krebsregistrierung liefert die Datengrundlage für evidenzbasierte Entscheide in der onkologischen Versorgung. Methoden Basierend auf den Ergebnissen des Schweizerischen Krebsberichts 2015 wird die Entwicklung von Krebs in der Schweiz (Prävalenz, Inzidenz, Mortalität, Überleben) beschrieben. Daraus abgeleitet werden neue Anforderungen an die Ärzteschaft skizziert und Neuerungen in der schweizerischen Krebsregistrierung erläutert. Ergebnisse Die Krebsinzidenz nahm in der Schweiz über die letzten 30 Jahre stetig zu, aktuell erkranken jährlich um die 42.000 Personen. Die Krebssterblichkeit sank im gleichen Zeitraum um 36 % (Männer) bzw. 27 % (Frauen). Momentan leben in der Schweiz rund 320.000 Personen mit einer Krebserkrankung, darunter viele Langzeitüberlebende. Viele davon haben physische, psychische und soziale Bedürfnisse, die bis anhin wenig beachtet wurden. Die Krebsregistrierung in der Schweiz wird durch ein neues Bundesgesetz modernisiert und internationalen Standards angepasst und kann durch die Untersuchung der Behandlungs-und Versorgungsqualität einen wichtigen Beitrag zur besseren Versorgung von Krebspatienten leisten. Fazit Eine umfassende, koordinierte und nachhaltige Versorgung von Krebspatienten ist notwendig und bedarf neben entsprechenden Angeboten in der Versorgung auch Weiterentwicklungen in der Krebsregistrierung.

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Bedeutung von Krebsregistern für die Versorgungsforschung

Cited by 6 publications

References 10 publications

Towards Distributed Healthcare Systems – Virtual Data Pooling Between Cancer Registries as Backbone of Care and Research

Towards Distributed Healthcare Systems – Virtual Data Pooling Between Cancer Registries as Backbone of Care and Research

Real-world evidence research based on big data

Krebs in der Schweiz

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