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How robust is ACTIVLIM for the follow-up of activity limitations in patients with neuromuscular diseases?
publication. It showed a good reliability (R = 0.95), an appropriate targeting for 87% of the sample and an excellent invariance across age, gender, language and time. Despite some variations in the item ...
Early stages of building a rare disease registry, methods and 2010 data from the Belgian Neuromuscular Disease Registry (BNMDR).
epidemiological data, the registry targets to gather high quality data, that the sample to be representative of the population and that it be complete. The past 5 years of building the registry have improved its ...