gms | German Medical Science

Brücken bauen – von der Evidenz zum Patientenwohl: 19. Jahrestagung des Deutschen Netzwerks Evidenzbasierte Medizin e. V.

Deutsches Netzwerk Evidenzbasierte Medizin e. V.

08.03. - 10.03.2018, Graz

TACSI – Development and Evaluation of an Online Tool to Approach Cancer Survivors to Participate in Translational Cancer Research: Protocol of a Pilot Study

Meeting Abstract

  • author presenting/speaker Jasper Plath - Institute of General Practice, Goethe University Frankfurt; German Cancer Research Center (DKFZ), Heidelberg; German Cancer Consortium (DKTK), Frankfurt
  • Andrea Siebenhofer - Institut für Allgemeinmedizin und evidenzbasierte Versorgungsforschung (IAMEV), Medizinische Universität Graz; Institut für Allgemeinmedizin, Goethe-Universität Frankfurt
  • Holger Storf - Medical Informatics Group (MIG), University Hospital Frankfurt; German Cancer Research Center (DKFZ), Heidelberg; German Cancer Consortium (DKTK), Frankfurt
  • Corina Guethlin - Institute of General Practice, Goethe University Frankfurt

Brücken bauen – von der Evidenz zum Patientenwohl. 19. Jahrestagung des Deutschen Netzwerks Evidenzbasierte Medizin. Graz, Österreich, 08.-10.03.2018. Düsseldorf: German Medical Science GMS Publishing House; 2018. Doc18ebmP2-1

doi: 10.3205/18ebm073, urn:nbn:de:0183-18ebm0738

Published: March 6, 2018

© 2018 Plath et al.
This is an Open Access article distributed under the terms of the Creative Commons Attribution 4.0 License. See license information at



Background: Cancer survival rates have considerably increased over the past decades. However, survival is not the same as being healthy. Late effects of therapy as well as cancer recurrence and social disadvantages are relevant problems even after regular follow-up care (e.g. more than 5 years after treatment). In consequence, there is a need for tailored care in this group of long-term survivors. To overcome the barriers involved in addressing long-term survivors for participation in cancer research, new approaches must be considered.

Aims: We plan to evaluate an online electronic data capture (online-EDC) solution to approach long-term cancer survivors, and to collect their cancer-related data. As an incentive to participate, we will provide health information that is tailored to meet the special needs of affected individuals through the online-EDC as well.

Design: Long-term cancer survivors will be approached both within health care services (general practice, University Cancer Center) and outside it (online, social media). The online-EDC will be based on the OSSE-registry framework with a high degree of inter­operability, generic functionality and, as a result, a high degree of reusability and sustainability. The online-EDC includes a questionnaire to capture relevant data (to be provided by long-term survivors themselves), and participants will be asked to register for further research. Participants will also receive a fact sheet containing general information on potential late effects of therapy, typical symptoms and contact information for further advice through the online-EDC (incentive).

Discussion: Our long-term goal is to offer cancer survivors high-quality care after regular follow-up care. This care must take into account patients’ symptoms and needs and involve all relevant care providers including cancer centers and primary care. In the future, carers of long-term survivors and patients should be able to access all available cancer-related information. In order to collect this data and to provide it to health care providers, it is essential to set up a data capturing system.