Bringing new safe and effective treatments more rapidly and more efficiently to CF patients is the primary objective of Mukoviszidose Institute (MI).
MI is a non-for-profit limited liability company (gGmbH) registered as a charity in Germany. It is aa 100% subsidiary of the German CF association (Mukoviszidose e.V.). MI provides professional services to CF-centres, allied health-professionals and pharmaceutical or medical-device companies developing innovative solutions for CF-patients. MI is also the scientific arm of Mukoviszidose e.V. fostering scientific progress by generating, evaluating and disseminating scientific projects in the field of CF. We also serve as a state-of-the art “trusted third party” for scientific information to patients. As a competent and effective partner, MI is able to help scientists, clinicians and companies in conducting clinical trials, both investigator-initiated and commercial. Our second area of activity is fostering continuous quality improvement at CF-centres across Germany.
To support translation of CF basis research to clinical approach, Mukoviszidose Institute maintains a CF related research funding program. The program includes funding of external projects as well as own clinical projects.
MI also funds clinical trials. To bring innovative concepts to clinical practice as soon as possible and to ensure the quality of (investigator initiated) trials, MI provides help in project planning as well as coordination. To conduct multicenter studies, MI established the CF-CTN (Clinical Trial Network) GERMANY in cooperation with the most experienced German CF Centers.
MI is also legal sponsor of proprietary clinical trials with PsAerIgY being the largest one. For more details please visit: www.impactt.eu. If necessary, MI supports the design and administrative set-up and conductance of clinical trials.
Improving therapy and provide information are also fundamental tasks of MI. MI answers scientific and medical questions from patients and other interested people. MI also provides evidence-based news about CF research. Furthermore, MI organizes and supports the development and update of CF Guidelines in cooperation with CF experts. MI is committed to communicate benefits and risks of established and newly introduced therapies scientifically sound, well-balanced, transparent and evidence-based.
Also, quality management of CF centers is supported by MI. MI accredits and certifies CF centers that fulfill the high quality criteria. The certification is based upon a multi-level assessment and overseen by a certification board.
In line with research of patient-centered care, the project VEMSE („Evaluation eines ganzheitlichen patientenzentrierten Versorgungsmodells für Patienten mit seltenen Erkrankungen unter besonderer Berücksichtigung der psychosozialen Versorgung am Beispiel Mukoviszidose“) was initiated by MI. The project evaluates patient-centered care in patients with rare diseases with special focus on psychosocial care in CF patients. It is partly financed by the German Ministry of Health.
The national German Alliance for people with rare diseases (NAMSE) was initiated in March 2010 and is supported by the office hosted by MI. This project is financed by a grant from the German Ministry of Health.
For more information, please contact:
Mukoviszidose Institut gGmbH
In den Dauen 6, 53117 Bonn, Germany