Zobrazeno 1 - 8
of 8
pro vyhledávání: '"Miriam Schlangen"'
Autor:
Miriam Schlangen, Katharina Heuing
Publikováno v:
Journal of Health Monitoring, Vol 8, Iss 4, Pp 7-16 (2023)
Background: Rare diseases are a heterogeneous group of complex clinical patterns, which more often than not run a chronic course. The fact that they are rare complicates the provision of medical care for the specific diseases. Results: In the field o
Externí odkaz:
https://doaj.org/article/6cc2af1581264be2bb98e9e2e4bd1bb4
Autor:
Nils B. Heyen, Johanna Gardecki, Daniela Eidt-Koch, Miriam Schlangen, Sophie Pauly, Olaf Eickmeier, Thomas Wagner, Tanja Bratan
Publikováno v:
Journal of Participatory Research Methods, Vol 3, Iss 1 (2022)
Citizen science projects in health-related research usually follow a crowdsourcing approach where laypersons primarily have a supplying role in data collection. By contrast, this article presents an approach on a much higher engagement level (co-crea
Externí odkaz:
https://doaj.org/article/a3225b048a0d42ac8066d27dd2ee38fd
Publikováno v:
Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz. 65:1119-1125
ZusammenfassungMenschen mit Seltenen Erkrankungen stehen im Gesundheitssystem vor besonderen Herausforderungen. Die Seltenheit der einzelnen Erkrankungen erschwert aus strukturellen, medizinischen und ökonomischen Gründen sowohl die medizinische Ve
Publikováno v:
Bundesgesundheitsblatt, Gesundheitsforschung, GesundheitsschutzLiteratur. 65(11)
People with rare diseases face specific challenges within the healthcare system. Due to the rarity of the individual diseases, both medical care and research are made difficult for structural, medical, and economic reasons. In 2010, the National Acti
Autor:
Holger, Storf, Jürgen, Stausberg, Gerhard, Kindle, Bernd, Quadder, Miriam, Schlangen, Maggie C, Walter, Frank, Ückert, Thomas O F, Wagner, C, Steinmüller
Publikováno v:
Bundesgesundheitsblatt, Gesundheitsforschung, GesundheitsschutzLiteratur. 63(6)
The National Action Plan for People with Rare Diseases contains 52 concrete actions, including in the fields of care, research, diagnosis, and information management. With the aim of improving the quality and interoperability of national registries i
Autor:
Andreas L.G. Reimann, Miriam Schlangen
Publikováno v:
Journal of Cystic Fibrosis. 10:S110-S113
Background and methods Workpackage 4 of EuroCareCF brought together a group of small and middle-size companies (SMEs) with strong interest in drug development for cystic fibrosis (CF). The common interest of SMEs and patient organizations (PO) in mut
Autor:
Andreas L.G. Reimann, Miriam Schlangen
Publikováno v:
Journal of cystic fibrosis : official journal of the European Cystic Fibrosis Society. 10
Small and middle-sized enterprises (SMEs) can make important contributions to medical progress through the development of new safe and effective drugs that address the greatest unmet needs of patients. Regulatory inconsistencies across agencies in va
Publikováno v:
Orphanet Journal of Rare Diseases
To improve health and well-being of people with rare diseases and to implement the Council Recommendation of the European Union on rare diseases the German Federal Ministry of Health, in cooperation with the Federal Ministry of Education and Research