New registry of patients with achondroplasia

Achondroplasia is a rare genetic condition, which affects the normal growth of human skeleton. It is important for patients, their families and physicians to be able to connect and to share information. A new registry, entitled ReACH, has been developed in cooperation between the Faculty of Medicine of the Masaryk University (FM MU) and the Institute of Biostatistics and Analyses of the Masaryk University (IBA MU).


The ReACH registry makes it possible to share experience and information concerning treatment in clinical practice. It also helps scientists to understand better clinical aspects, incidence and epidemiology of achondroplasia in Central Europe. The registry will also make it possible to search for volunteers to participate in clinical trials focused on achondroplasia. Finally, the registry enables patients and their families to provide feedback to health care professionals regarding the quality of care and how it might be possibly improved.

More information about the registry is available on the project website.

10.11.2015


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