Literature DB >> 18425694

[Rare diseases. Funding programs in Germany and Europe].

Birgit Wetterauer1, R Schuster.   

Abstract

Rare diseases are defined by lifetime prevalence and are a medically heterogeneous group. Treatment options and the state of knowledge about these diseases are also very heterogeneous, as well as the respective needs for research. This article provides an overview on funding programs in Germany, further examples of countries within Europe and the European Commission, and a few examples of research networks. It is one of the goals of the article to show similarities and differences between the funding programs. The funding organizations of most countries and the European Commission (FP7) fund research on rare diseases with programs in which researchers define the contents in bottom up approaches. While, in general, basic science is well established, the translation of knowledge into clinical benefit for the patients is slow. Because of the low prevalence and geographic distribution of patients and researchers, research on rare diseases suffers from infrastructural deficits. While France, Germany, Italy and Spain have implemented research programs which are specific for rare diseases and aim to support networking of scarce resources and to stimulate interdisciplinary collaborations, other countries fund research on rare diseases within the context of general programs.

Entities:  

Mesh:

Year:  2008        PMID: 18425694     DOI: 10.1007/s00103-008-0524-7

Source DB:  PubMed          Journal:  Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz        ISSN: 1436-9990            Impact factor:   1.513


  9 in total

Review 1.  [Identification of rare diseases in the oral cavity].

Authors:  Marcel Hanisch; Susanne Jung; Johannes Kleinheinz
Journal:  Internist (Berl)       Date:  2018-09       Impact factor: 0.743

Review 2.  [Speak up for people with rare diseases: ACHSE : ACHSE, Rare Diseases Germany, and its network].

Authors:  C Mundlos
Journal:  Internist (Berl)       Date:  2018-12       Impact factor: 0.743

3.  Expert Delphi survey on research and development into drugs for neglected diseases.

Authors:  Angela Fehr; Petra Thürmann; Oliver Razum
Journal:  BMC Health Serv Res       Date:  2011-11-16       Impact factor: 2.655

4.  Rare Diseases with Periodontal Manifestations.

Authors:  Marcel Hanisch; Thomas Hoffmann; Lauren Bohner; Lale Hanisch; Korbinian Benz; Johannes Kleinheinz; Jochen Jackowski
Journal:  Int J Environ Res Public Health       Date:  2019-03-09       Impact factor: 3.390

5.  Interface management concepts in healthcare for rare diseases in Germany: a study protocol for a mixed-methods study to develop best practice recommendations.

Authors:  Laura Inhestern; David Zybarth; Ramona Otto; Maja Brandt; Martin Härter; Corinna Bergelt
Journal:  BMJ Open       Date:  2020-11-30       Impact factor: 2.692

Review 6.  Being the Pillar for Children with Rare Diseases-A Systematic Review on Parental Quality of Life.

Authors:  Johannes Boettcher; Michael Boettcher; Silke Wiegand-Grefe; Holger Zapf
Journal:  Int J Environ Res Public Health       Date:  2021-05-08       Impact factor: 3.390

7.  Oral Symptoms and Oral Health-Related Quality of Life in People with Rare Diseases in Germany: A Cross-Sectional Study.

Authors:  Sabrina Wiemann; Nicolas Frenzel Baudisch; Rainer A Jordan; Johannes Kleinheinz; Marcel Hanisch
Journal:  Int J Environ Res Public Health       Date:  2018-07-15       Impact factor: 3.390

8.  Evaluation of two family-based intervention programs for children affected by rare disease and their families - research network (CARE-FAM-NET): study protocol for a rater-blinded, randomized, controlled, multicenter trial in a 2x2 factorial design.

Authors:  Johannes Boettcher; Bonnie Filter; Jonas Denecke; Amra Hot; Anne Daubmann; Antonia Zapf; Karl Wegscheider; Jan Zeidler; J-Matthias Graf von der Schulenburg; Monika Bullinger; Miriam Rassenhofer; Michael Schulte-Markwort; Silke Wiegand-Grefe
Journal:  BMC Fam Pract       Date:  2020-11-20       Impact factor: 2.497

Review 9.  [se-atlas.de-Medical care atlas for people with rare diseases].

Authors:  Michaela Neff; Jannik Schaaf; Niels Tegtbauer; Johanna Schäfer; Manuela Till; Thomas O F Wagner; Holm Graeßner; Christine Mundlos; Holger Storf
Journal:  Internist (Berl)       Date:  2021-07-20       Impact factor: 0.743

  9 in total

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