Medvita: Rare Diseases
Time: 30 October 2002, 14:30-15:30 Location: Salle C-3 Presenters/ Participants: Dr. Remo Turanli and Dr. Felix Simac, Medvita Reporter: John Copland (ICVolunteers) Languages: English Key words:
Dr Remo Turanli, CEO of Medvita presented the project to Mr. Jaime Saborio of UNAIDS, Mr. Nemai Basu, a freelance management consultant, and the reporter. The concept of Medvita was developed by Drs. Turanli and Simac while working on Health Record solutions. Its basic objectives are the development and promotion of an electronic health record system for rare diseases for patients, doctors and researchers in the developing and developed world.
Sustainable creation and maintenance of electronic health records for rare diseases will provide a worldwide information exchange which will integrate different ethical, financial, environmental, and health systems and provide an active solution to infrastructure costs by turning supposed money losers into new business opportunities, In the North it will efficiently contribute to public health. In the South it opens a unique opportunity to have direct access to first world medicine and infrastructure.
Principal components of the project are:
- Setting up of sustainable infrastructure for the creation, storage and data mining of health records in different languages.
- Setting up of a network of regional centers of excellence and reference for the processing of genetic material and handling of data.
- Concurrent development of economic models with the pharmaceutical. industry, local health care systems and non-profit organizations.
Principal targeted groups and beneficiaries are:
- the pharmaceutical industry,
- patients,
- doctors, and, in the long run,
- global society through the development of diagnostics and
- therapies for rare diseases.
It was noted that of the 6 000 rare diseases now documented, only 250 are now treated with drugs, so the potential in this area is great indeed.
Mr. Basu, who had experience with medical researchers was doubtful that those dealing with a specific disease would be willing to cooperate on this kind of open international basis. Pharmaceutical companies dealing with orphan drugs however, would probably find the project to their advantage.
In conclusion his suggestion was that the project should be presented first to the European Union, who, if it accepts the project, could push it on a regional level and overcome the objections of individual researchers.
