Data protection working group

Focus on data protection and security issues

The key role of this working group is to advise the TMF networks on data protection and security issues as well as clarify unresolved data protection problems. A generic data protection concept with two alternative models was developed as a basis for consultation. This concept was well received by the Data Protection Officers at state and federal level and it can be refined to create specific concepts for each network. It also includes examples of phrasing for informed consent declarations.

Numerous networks have already taken advantage of this process. Suitable system components were developed for the implementation of the concept, for example a pseudonymization service and a security infrastructure were created (Public Key Infrastructure). This enables research networks to develop central data collections for their research projects.

At present, the most important task for this working group is further development of the data protection concept and informed consent declaration with respect to biobanking and genetic research. A project investigating just this was launched together with the biobanking working group.

The further goals of this working group include

Maintenance and development of the pseudonymization service
Maintenance and development of the security infrastructure, e.g. development and operation of network-wide, role-based assignment of rights
Development of a central data custodian service
Model scenarios, SOPs and templates for data protection and their evaluation
Creation of generic security concepts and protection profiles
Integration of security services in system components
IT security certification of system components
Clarification of other unresolved issues together with the Data Protection Officers working group, e.g. as regards data transfer between various research networks, cooperation with practice networks, projects concerned with the epidemiology of infectious diseases, handling of data from minors and patients who are unable to give consent

(Letzte Aktualisierung: 18.04.2012)

Spokesperson

Prof. Dr. Klaus Pommerening

Competence Network Paediatric Oncology and Haematology

Institute for Medical Biometry, Epidemiology and Informatics
Johannes Gutenberg University Mainz

Phone: +49 61 31 17 31 06

E-Mail

Vice spokesperson

Gisela Antony

Competence Network Parkinson

University of Marburg

Phone: +49 64 21 5 86 54 40

E-Mail

Contact person in the TMF Office

Johannes Drepper

Phone: +49 30 31 01 19 53

E-Mail

Data protection working group 2011

November 9th, 2011 in Berlin

V.l.n.r.: S.C.Semler (TMF e.V. Geschäftsstelle, Berlin), J. Schwanke (Universitätsmedizin Göttingen), C. Meisner (POSITIVE-Net), M. Quade (Kompetenznetz Angeborene Herzfehler), R. Majeed (Universität Gießen), K.Pommerening (Kompetenznetz POH, Mainz), J.Drepper (TMF e.V. Geschäftsstelle, Berlin), T. Ganslandt (Universitätsklinik Erlangen), H.-W. Rock (Kompetenznetz Parkinson), M. Neumann (Universitätsklinik Würzburg), R. Jahns (Universitätsklinik Würzburg), M. W. Engel (SKELNET), R. Lautenschläger (TU München), C. Plötz (TMF e.V. Geschäftsstelle, Berlin)

Data protection working group 2009

November 5th, 2009 in Berlin

L.t.r.: S.C.Semler (TMF e.V. Geschäftsstelle, Berlin), S.Taubert (Kompetenznetz HIV/AIDS, Berlin), C.Meisner (Positive-Net, Tübingen), P.Neuhaus (Skin-Staph), G.Antony (Kompetenznetz Parkinson, Marburg), S.Ostrzinski (SHIP), K.Helbing (Kompetenznetz Angeborene Herzfehler), J.Drepper (TMF e.V. Geschäftsstelle, Berlin), K.Pommerening (Kompetenznetz POH, Mainz), V.Thiemann (ZKS Münster), J.Steffen (GBG Forschungs GmbH), R.Röhrig (NGFN Netz Infektion und Entzündung, Gießen), R.Speer (KKS Leipzig), U.Harnischmacher (ZKS Köln), B.Haferkorn (Centrum für Schlaganfallforschung).

Data protection working group 2008

November 6th, 2008 in Berlin

Data protection working group 2007

June 21st, 2007 in Berlin

L.t.r.: S.C.Semler (TMF e.V. Geschäftsstelle, Berlin), J.Drepper (TMF e.V. Geschäftsstelle, Berlin), S.Taubert (Kompetenznetz HIV/AIDS, Berlin), M.Spitzer (Netzwerk Ichthyose NIRK, Münster), K.Pommerening (Kompetenznetz POH, Mainz), T.Ganslandt (Netzwerk Epidermolysis bullosa, Erlangen), G.Antony (Kompetenznetz Parkinson, Marburg), R.Röhrig (NGFN Netz Infektion und Entzündung, Gießen), U.Sax (Kompetenznetz Angeborene Herzfehler, Göttingen), R.Speer (KKS Leipzig), C.Meisner (Positive-Net, Tübingen), K.Richter ( Kompetenznetz CAPNETZ, Ulm), T.Müller (Kompetenznetz Hepatitis, München), J.Lutz (Kompetenznetz Vorhofflimmern, München).

Data protection working group 2006

September 7th, 2006 in Berlin

Data protection working group 2005

September 28th, 2005 in Berlin

Data protection working group 2004

September 30th, 2004 at the annual GMDS-conference in Innsbruck

L.t.r.: Dr. Ralf Herold (KN POH), Sebastian C. Semler (TMF e.V.), Tatjana Ferrari (KN Schizophrenie), Dr. Michael Reng (KN CED), Prof. Dr. Klaus Pommerening (KN POH), Dr. Christine Lautenschläger (KKS Halle), Peter Ihle (KN Lymphome), Silvio Schuster (KKS Dresden), Thomas Schober (KKS Köln), Christian Schwarz (KN CED).