Assessing Prevalence and Characteristics of Rare Disease Cardiomyopathies: A Modest Proposal

Rare diseases, particularly those falling under the rubric of neuromuscular illnesses, present challenges to accurate epidemiologic characterization. Because rare diseases involve rare patients, and epidemiologic assessment requires aggregation of large amounts of patient data including a spectrum of subgroups at risk, accurate evaluation of rare disease incidence, prevalence and risk, as well as therapeutic efficacy, can only be performed well in the context of cooperation between clinician-investigators to accrue data in an unbiased, standardized approach.
Source: Journal of Cardiac Failure - Category: Cardiology Authors: Source Type: research