The Italian National Registry for FSHD: an enhanced data integration and an analytics framework towards Smart Health Care and Precision Medicine for a rare disease

The Italian National Registry for FSHD: an enhanced data integration and an analytics framework towards Smart Health Care and Precision Medicine for a rare disease

Abstract Background The Italian Clinical network for FSHD (ICNF) has established the Italian National Registry for FSHD (INRF), collecting data from patients affected by Facioscapulohumeral dystrophy (FSHD) and their relatives. The INRF has gathered data from molecular analysis, clinical evaluation,...

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Bibliographic Details
Main Authors: Cinzia Bettio, Valentina Salsi, Mirko Orsini, Enrico Calanchi, Luca Magnotta, Luca Gagliardelli, June Kinoshita, Sonia Bergamaschi, Rossella Tupler
Format: article
Language:EN
Published: BMC 2021
Subjects:
Rare disease registry
Data collection
Data integration
FSHD
Rare diseases
Medicine
R
Online Access:https://doaj.org/article/f2cc7c6cc1104d04a0dd2afdd0dacf6e
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https://doaj.org/article/f2cc7c6cc1104d04a0dd2afdd0dacf6e

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