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
Prof. Dr. Holger Storf
Direction / Conception
Johanna Schäfer
Conception / Editorial office
Niels Tegtbauer
Technical implementation
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
Other partners
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) |