Creating an effective clinical registry for rare diseases.
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2015-11-13
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D'Agnolo, Hedwig Ma
Kievit, Wietske
Andrade, Raul J
Karlsen, Tom Hemming
Wedemeyer, Heiner
Drenth, Joost Ph
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Abstract
The exposure of clinicians to patients with rare gastrointestinal diseases is limited. This hurts clinical studies, which impedes accumulation of scientific knowledge on the natural disease course, treatment outcomes and prognosis in these patients. An excellent method to detect patterns on an aggregate level that would not be possible to discover in individual cases, is a registry study. This paper aims to describe a template to create a successful international registry for rare diseases. We focus mainly on rare hepatic diseases, but lessons from this paper serve other fields in medicine, as well.
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Clinical registry, database, gastrointestinal disease, liver disease, liver transplantation, practical guide, rare diseases, rare liver disorders, registry design