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"Muu" projekt 2003220
2003220 "Exchange of information using a European information network on rare diseases. (1.04.2004−30.11.2008)", Andres Metspalu, Eesti Biokeskus.
2003220
2003220
Exchange of information using a European information network on rare diseases.
Exchange of information using a European information network on rare diseases.
1.04.2004
30.11.2008
Teadus- ja arendusprojekt
Muu
ValdkondAlamvaldkondCERCS erialaFrascati Manual’i erialaProtsent
1. Bio- ja keskkonnateadused1.12. Bio- ja keskkonnateadustega seotud uuringud, näiteks biotehnoloogia, molekulaarbioloogia, rakubioloogia, biofüüsika, majandus- ja tehnoloogiauuringudT490 Biotehnoloogia 1.5. Bioteadused (bioloogia, botaanika, bakterioloogia, mikrobioloogia, zooloogia, entomoloogia, geneetika, biokeemia, biofüüsika jt100,0
AsutusRollPeriood
Eesti Biokeskuspartner01.04.2004−30.11.2008
AsutusRiikTüüp
European Commission DG Public Health
PerioodSumma
01.04.2004−30.11.2008605 257,00 EEK (38 682,97 EUR)
38 682,97 EUR
0,00 EUR

"The project aim is to offer to the health care professionals, scientists, health authorities, patients and their relatives, the media and the community at large reliable, up-to-date, relevant information on rare diseases and orphan drugs. It is based on an already effective web server : Orphanet. The information provided by Orphanet comprises the disease name, prevalence rate in the Community, synonyms, a general description of the disorder, symptoms, causes, epidemiological data, preventive measures, standard treatments (e.g. orphan drugs), clinical trials, diagnostic laboratories, specialised consultations, research projects and other web resources. The availability of this information is been made widely-known via the Internet at the address: www.orpha.net It is accessed by 4,000 independent users per average day from all over Europe. The encyclopaedia of rare diseases is available both in English and French and translation are on the way for German, Italian, Spanish and Portuguese languages. It is written by European experts which are nominated by a scientific board of 83 top experts. The encyclopaedia is covering 990 diseases: there is an abstract in French and in English for all of them and a review article for 445 of them, either in French or in English. The objective is to cover 1,000 diseases in English in 2006. The directory of services is maintained by the coordinating team but updated by the country partners. Up to now the database contains information about clinical laboratories and specialised consultations in Austria, Belgium, France, Germany, Italy, Portugal, Spain and Switzerland. The project is to extent the data collection to clinical trials in these countries and to extent the data collection about diagnostic laboratories, specialised clinics, research projects, clinical trials and other web resources to cover in addition Bulgaria, Cyprus, Denmark, Estonia, Ireland, Finland, Greece, Hungary, Netherlands, Romania, and United-Kingdom."
"The project aim is to offer to the health care professionals, scientists, health authorities, patients and their relatives, the media and the community at large reliable, up-to-date, relevant information on rare diseases and orphan drugs. It is based on an already effective web server : Orphanet. The information provided by Orphanet comprises the disease name, prevalence rate in the Community, synonyms, a general description of the disorder, symptoms, causes, epidemiological data, preventive measures, standard treatments (e.g. orphan drugs), clinical trials, diagnostic laboratories, specialised consultations, research projects and other web resources. The availability of this information is been made widely-known via the Internet at the address: www.orpha.net It is accessed by 4,000 independent users per average day from all over Europe. The encyclopaedia of rare diseases is available both in English and French and translation are on the way for German, Italian, Spanish and Portuguese languages. It is written by European experts which are nominated by a scientific board of 83 top experts. The encyclopaedia is covering 990 diseases: there is an abstract in French and in English for all of them and a review article for 445 of them, either in French or in English. The objective is to cover 1,000 diseases in English in 2006. The directory of services is maintained by the coordinating team but updated by the country partners. Up to now the database contains information about clinical laboratories and specialised consultations in Austria, Belgium, France, Germany, Italy, Portugal, Spain and Switzerland. The project is to extent the data collection to clinical trials in these countries and to extent the data collection about diagnostic laboratories, specialised clinics, research projects, clinical trials and other web resources to cover in addition Bulgaria, Cyprus, Denmark, Estonia, Ireland, Finland, Greece, Hungary, Netherlands, Romania, and United-Kingdom."
www.orpha.net