se-atlas

Mapping of Health Care Providers
for People with Rare Diseases

se-atlas- Health Care Atlas for People with Rare Diseases

The se-atlas- Health Care Atlas for People with Rare Diseases was developed within the context of the National Action Plan for People with Rare Diseases. Initially, the se-atlas was funded by the Federal Ministry of Health during a four-year funding period.
Since then, the web-based information platform se-atlas provides an overview of the care options for people with rare diseases in Germany. The various care facilities and patient organisations for rare diseases are visualised both in an interactive map view and in the form of a list

The care atlas is aimed at affected persons, relatives, doctors, non-medical staff and interested parties alike.

The care facilities and patient organisations presented in the se-atlas are predominantly based on existing data collections that are brought together in the se-atlas. Since the publication of se-atlas in 2015, the database has continued to grow. The feedback from users is an important support in this process.

In order to ensure the quality of the data, we try to position ourselves as broadly as possible and to distribute the responsibility and maintenance among several shoulders. Particular mention should be made here of the centres for rare diseases and the patient organisations, to whom we provide special functions in the se-atlas.

team se-atlas

Realisation se-atlas.de

Dr. Holger Storf
Prof. Dr. Holger Storf
Direction / Conception
Johanna Schäfer
Johanna Schäfer
Conception / Editorial office
Niels Tegtbauer
Niels Tegtbauer
Technical implementation
Manuela Till
Manuela Till
Student Assistant
Alumni
  • Sabrina Walter (IMI, Frankfurt)
  • Carolin Angerer (IMI, Frankfurt)
  • Michael Wiedemann (IMI, Frankfurt)
  • Wulf Pfeiffer (IMI, Frankfurt)
  • Tobias Hartz (IMBEI, Mainz)
  • Arthur Michel (IMBEI, Mainz)
  • Raphael Melloni (IMBEI, Mainz)
  • Christian Eberhard (IMBEI, Mainz)
  • Charlotte Schröder (IMI, Frankfurt)
  • Naima El Ouenjli Hernandez (IMI, Frankfurt)
  • Anila Ahmed (FRZSE, Frankfurt)
  • Benjamin Peschke (ZSE Tübingen, Tübingen)
  • Anniki Knop (ZSE Tübingen, Tübingen)
  • Lisa Biehl (ACHSE e.V., Berlin)
  • Annette Pfalz (FRZSE, Frankfurt)

Project partners

Consortium leader

Logo: Institut für Medizininformatik
Logo: Universitätsklinikum Frankfurt

Other partners

Logo: Zentrum für Seltene Erkrankungen (ZSE) Tübingen
Logo: Orphanet
Logo: Achse Online e.V.
Logo: Frankfurter Referenzzentrum für Seltene Erkrankungen

Publications

Konferenzbeiträge

Year Article
2018 Schaefer J, Tegtbauer N, Wagner TOF, Storf H (2018) 3 Years se-atlas - Mapping of Health Care Providers and Support Groups for People with Rare Diseases, 9th European Conference on Rare Diseases & Orphan Products (ECRD). Vienna 2018, Orphanet Journal of Rare Diseases 13/2: 167
(DOI)
2018 Haase J, Göbel J, Litzkendorf S, Pauer F, Zeidler J, Wagner TOF, Storf H (2017) Informationsangebote für Menschen mit seltenen Erkrankungen – Zwischenstand aus den Projekten se-atlas und ZIPSE. 62. Jahrestagung der Deutschen Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie e.V. – GMDS2017
(DOI)
2016 Storf H, Haase J, Hernandez N, Schröder CC, Göbel J, Tegtbauer N, Ahmed A, Peschke B, Windhorst G, Biehl L, Nyoungui E, Schmidtke J, Graessner J, Ückert F, Wagner T (2016) Versorgungsatlas se-atlas.de: Daten & Fakten nach 15 Monaten Laufzeit. 61. Jahrestagung der Deutschen Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie e.V. – GMDS2016 / Health – Exploring Complexity (HEC 2016)
(DOI)
2014 Storf H, Hartz T, Schmidtke J, Derks M, Rommel K, Nyoungui E, Graessner H, Wagner TOF, Ueckert F (2014) Vision und Herausforderungen - eine kartographische Darstellung der Expertenzentren für Seltene Erkrankungen. 59. Jahrestagung der Deutschen Gesellschaft für Medizinische Informatik, Biometrie und Epidemiologie e.V. – GMDS2014
(DOI)

Zeitschriftenbeiträge

Year Article
2021 Neff M, Schaaf J, Tegtbauer N, Schaefer J, Till M, Wagner Thomas O.F., Graeßner H, Mundlos C, Storf H (2021) se-atlas - Versorgungsatlas für Menschen mit Seltenen Erkrankungen. Internist, Springer-Verlag
(DOI)
2018 Schaefer J, Tegtbauer N, Pfeiffer W, Wagner TOF, Storf H (2018) Mapping of Health Care Providers for People with Rare Diseases – from Vision to Implementation. Stud Health Technol Inform 2018, 247:940-944
(DOI)
2017 Haase J, Wagner TOF, Storf H (2017) se-atlas - the health service information platform for people with rare diseases : Supporting research on medical care institutions and support groups. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2017/5;60(5):503-509
(DOI)
2014 Storf H, Hartz T, Tegtbauer N, Pfeiffer W, Schmidtke J, Graessner H, Wagner TOF, Ueckert F (2014) Vision and Challenges of a Cartographic Representation of Expert Medical Centres for Rare Diseases. Stud Health Technol Inform. 2014;205:677-681
(DOI)
2014 Storf H, Hartz T, Pfeiffer W, Rommel K, Derks M, Nyoungui E, Schmidtke J, Graessner H, Wagner TOF, Ueckert F (2014) se-atlas – Cartographic Representation of Experts for Rare Diseases. Orphanet Journal of Rare Diseases 9(1), 2014
(DOI)