Orphan Drugs; Clinical Trials in Reality. Note on The Orphanet project. The expected results, presented by year in Table 1, describe the expected increase in website users, development of the Encyclopaedia, development of the Directory of Services, and remaining project management tasks. Orphanet is now the most accessed website in the world in the field of rare diseases. Conclusion The Orphanet project has developed according to plan and even surpassed initial expectations despite a difficult first year during which many new partners had to be trained, supervised, and supported without the required financial resources. Josep Font Internal medicine Prof.
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Members are nominated by country coordinators.
European initiatives in the field of rare diseases. These views have not been adopted or in any way approved by the Commission and do not necessarily represent the view of the Commission or the Directorate General for Health and Consumer Protection.
Hermann Feldmeier Infectious diseases Prof. The challenges of the future are to expand the network to all European countries and to other surrounding countries. Manpower for the execution of activities 1. Luxembourg, 21 June Robert H Anderson Pediatrics cardiology Prof. The main change in the methodology that took place during Year 3 is the development of an online sytem to allow professionals to update their activity.
Orphanet is now the most accessed website in the world in its category. Each partner has the choice either to be provided with the computer system tools to access and update the database from its own premises or to send the data to the central team for data processing. Miguel Del Campo Prof. The success of this project was to be measured both in terms of the increase in volume of information published on the website and in terms of number of users of the website.
Manpower in United- Kingdom The collection of data on services required days of an information scientist. Role of internet to the diagnosis and management of patients with malformation syndromes. At that time, the Encyclopaedia of rare diseases was available both in English and French and translation into German, Italian, Spanish and Portuguese was projected.
Ross Pinkerton Oncology Prof. Manpower in the Netherlands The collection of data on services required 5 days of the coordinator and days of an information scientist.
Un Servizio on-line di informazione sulle malattie rare e i farmaci orfani. Rev Epid Sante Publique Alain Fischer Pediatrics immunology Prof.
Manpower in Germany The collection of data on services required days of an information scientist. Francesco Muntoni Neuromuscular diseases Prof.
This development facilitates the updating and the collection of new data. As the reputation of Orphanet was already well established at the beginning of this contract, the increase in the average number of users is significantly larger than expected. Manpower in Estonia The collection of data on services required 64 days of the coordinator, 34 days of a medicxla and days of an information scientist.
Orphanet is now the most accessed website in the world in the field of rare diseases. In conclusion, the project has developed according to plan and even surpassed initial expectations in the number of website users, the number of summaries published in the Encyclopaedia, and the data collected in the Directory of Services. The production of the Encyclopaedia required 1, days of an editor. Orphanet now ranks very well in search engines making it the most frequently visited site in the world in its category.
Adrian Covic – Wikipedia
This process is illustrated on figure 1. The number of articles and summaries by year is illustrated on Figure 4. Il Giornale del Linguaggio Universale: By Angela Chaves Restrepo. Currently the countries which are fully responsible for their data entry include: