Background The foundation of health and medical research is data. Data sharing facilitates
the progress of research and strengthens science. Data sharing in research is widely …

Estimates of the frequencies of rare disorders vary from country to country; the global
average defined prevalence is 40 per 100 000 (0.04%). Some occur in only one or a few …

Patients with rare diseases commonly suffer from severe symptoms as well as chronic and
sometimes life-threatening effects. Not only the rarity of the diseases but also the poor …

Background In the last ten years, national rare disease networks have been established in
France, including national centres of expertise and regional ones, with storage of patient …

This thesis investigated the factors that contribute to the cultural shift towards open science
and data sharing in health and medical research, with a focus on the role health and …

Résumé Les maladies rares affectant la sphère oro-faciale (oligodontie, dysplasie
ectodermique, fente faciale syndromique ou isolée...) donnent lieu chez les patients à des …

Background: The foundation of health and medical research is data. Data sharing facilitates
the progress of research and strengthens science. Data sharing in research is widely …