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. 2020 Jan 17;15:18. doi: 10.1186/s13023-019-1285-0

Table 3.

Likert questions about training for the management and knowledge of rare diseases.(Based in Esteban Bueno et al. 2015)

Questions Hospital
(n = 37)
Mean (SD)
Primary care
(n = 132)
Mean (SD)
p-value
I consider that the medical training (clinical aspects) that I have received on rare diseases is adequate 2.29 (0.94) 1.72 (0.96) 0.001
I believe that the training I have received on the psychosocial impact of rare diseases is adequate 1.77 (0,81) 1.71 (0.93) 0.730
I consider myself qualified to coordinate the health care of a patient with a rare disease 2.40 (1.17) 1.82 (1.02) 0.002
I know the protocol of action that I must follow with a patient with a rare disease 2.19 (1.12) 1.58 (0.83) 0.002
I feel qualified to give genetic counselling to my patients with rare diseases 2.02 (1.01) 1.41 (0,74) 0.001
I know the existence of some of the registries of rare diseases existing in our country 2.33 (1.29) 2.10 (1.26) 0.305
I have enough information about the operation of rare disease registries 1.79 (0.99) 1.58 (0.84) 0.154
I know what the Reference Units for rare diseases are 2.40 (1.22) 1.97 (1.11) 0.029
I know the role of these Reference Units in the monitoring of these diseases 2.38 (1.29) 1.87 (1.07) 0.009
I know the existence of the State Reference Center for People with rare diseases and their families 2.09 (1.23) 1.87 (1.14) 0.272
I know how to refer patients to Reference Units 2.47 (1.32) 1.53 (0.77) 0.001
I know the functions performed by the State Reference Center for People with Rare Diseases and their Families 1.95 (1.07) 1.53 (0.78) 0.019
I know the global / national organizations / associations working in the field of rare disease 2.26 (1.09) 1.58 (0.85) 0.001
Overall 28.16 (10.55) 22.19 (8.77) 0.001

*Significant difference p < 0.05