Detalles de la búsqueda
1.
[Sustainable reimbursement of the Bcentres for rare diseases in Germany-status quo and solution approaches]. / Nachhaltige Vergütung der BZentren für Seltene Erkrankungen in Deutschland Status quo und Lösungsansätze.
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz
; 65(9): 872-880, 2022 Sep.
Artículo
en Alemán
| MEDLINE | ID: mdl-35864336
2.
Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study.
BMC Public Health
; 20(1): 860, 2020 Jun 05.
Artículo
en Inglés
| MEDLINE | ID: mdl-32503483
3.
Integrating patient perspectives in medical decision-making: a qualitative interview study examining potentials within the rare disease information exchange process in practice.
BMC Med Inform Decis Mak
; 19(1): 188, 2019 09 18.
Artículo
en Inglés
| MEDLINE | ID: mdl-31533712
4.
Telephone health services in the field of rare diseases: a qualitative interview study examining the needs of patients, relatives, and health care professionals in Germany.
BMC Health Serv Res
; 18(1): 99, 2018 02 09.
Artículo
en Inglés
| MEDLINE | ID: mdl-29426339
5.
Rare Diseases on the Internet: An Assessment of the Quality of Online Information.
J Med Internet Res
; 19(1): e23, 2017 01 18.
Artículo
en Inglés
| MEDLINE | ID: mdl-28100442
6.
[Central information portal on rare diseases : Implementation of quality- and needs-oriented information management]. / Zentrales Informationsportal über seltene Erkrankungen : Umsetzung eines qualitäts- und bedarfsorientierten Informationsmanagements.
Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz
; 60(5): 494-502, 2017 May.
Artículo
en Alemán
| MEDLINE | ID: mdl-28271149
7.
The Economic Impact and Health-Related Quality of Life of Spinal Muscular Atrophy. An Analysis across Europe.
Int J Environ Res Public Health
; 17(16)2020 08 05.
Artículo
en Inglés
| MEDLINE | ID: mdl-32764338
8.
The Burden of Spinal Muscular Atrophy on Informal Caregivers.
Int J Environ Res Public Health
; 17(23)2020 12 02.
Artículo
en Inglés
| MEDLINE | ID: mdl-33276656
9.
Metadata Correction: Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study.
JMIR Res Protoc
; 7(9): e11248, 2018 09 19.
Artículo
en Inglés
| MEDLINE | ID: mdl-30240351
10.
Conceptualization and Implementation of the Central Information Portal on Rare Diseases: Protocol for a Qualitative Study.
JMIR Res Protoc
; 7(5): e112, 2018 May 11.
Artículo
en Inglés
| MEDLINE | ID: mdl-29752252
11.
[Priority setting and rationing of pharmaceuticals - an experimental analysis of discussion processes]. / Priorisierung und Rationierung von Arzneimittel eine experimentelle Analyse von Diskussionsprozessen.
Z Evid Fortbild Qual Gesundhwes
; 125: 3-13, 2017 Aug.
Artículo
en Alemán
| MEDLINE | ID: mdl-28694036
12.
Shaping an Effective Health Information Website on Rare Diseases Using a Group Decision-Making Tool: Inclusion of the Perspectives of Patients, Their Family Members, and Physicians.
Interact J Med Res
; 6(2): e23, 2017 Nov 20.
Artículo
en Inglés
| MEDLINE | ID: mdl-29158209
13.
Adopting Quality Criteria for Websites Providing Medical Information About Rare Diseases.
Interact J Med Res
; 5(3): e24, 2016 Aug 25.
Artículo
en Inglés
| MEDLINE | ID: mdl-27562540
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