Assessing knowledge, perceptions, awareness and attitudes on rare diseases among health care providers and health students in Mexico
Benjamín Gómez-Díaz,
Edgar Oswaldo Zamora-González,
Antonio Miranda-Duarte,
Bladimir Roque-Ramírez,
Norma Alejandra Vázquez-Cárdenas,
Georgina Martínez-Gómez,
Jhoana Martín del Campo,
Erick Castillo-Jáuregui,
Ángel Rafael Castro-Navarro,
Antonio Marín-Cruz,
Stephanie Rosas-Maldonado,
Paulina Elizabeth Valdez-Anguiano,
Reyna Araceli Barrera-López,
Luz Berenice López-Hernández
Affiliations
Benjamín Gómez-Díaz
Genomic Medicine Service, National Institute of Rehabilitation, México City 14389, Mexico; Asociación de Distrofia Muscular de Occidente A.C, Mexico
Edgar Oswaldo Zamora-González
North University Center, University of Guadalajara, Jalisco 46200, Mexico; Life Cycle Department, Autonomous University of Guadalajara, Zapopan 45129, Mexico
Antonio Miranda-Duarte
Genomic Medicine Service, National Institute of Rehabilitation, México City 14389, Mexico
Bladimir Roque-Ramírez
Nutrigenetics and Nutrigenomics Laboratory, National Institute of Genomic Medicine (INMEGEN), Mexico City 14610, Mexico
Norma Alejandra Vázquez-Cárdenas
Life Cycle Department, Autonomous University of Guadalajara, Zapopan 45129, Mexico; Asociación de Distrofia Muscular de Occidente A.C, Mexico
Georgina Martínez-Gómez
Life Cycle Department, Autonomous University of Guadalajara, Zapopan 45129, Mexico
Jhoana Martín del Campo
Life Cycle Department, Autonomous University of Guadalajara, Zapopan 45129, Mexico
Erick Castillo-Jáuregui
Life Cycle Department, Autonomous University of Guadalajara, Zapopan 45129, Mexico
Ángel Rafael Castro-Navarro
Life Cycle Department, Autonomous University of Guadalajara, Zapopan 45129, Mexico
Antonio Marín-Cruz
Life Cycle Department, Autonomous University of Guadalajara, Zapopan 45129, Mexico
Stephanie Rosas-Maldonado
Life Cycle Department, Autonomous University of Guadalajara, Zapopan 45129, Mexico
Paulina Elizabeth Valdez-Anguiano
Education department, Dr. Darío Fernández Fierro General Hospital, Institute of Security and Social Services for State Workers, México City 03900, Mexico
Reyna Araceli Barrera-López
Skin and Tissue Bank, National Institute of Rehabilitation, México City 14389, Mexico
Luz Berenice López-Hernández
Life Cycle Department, Autonomous University of Guadalajara, Zapopan 45129, Mexico; Asociación de Distrofia Muscular de Occidente A.C, Mexico; Correspondence to: Departamento de Ciclo de Vida, Universidad Autónoma de Guadalajara. Av. Patria 1201, 45129, Zapopan, México.
Rare diseases (RDs) are serious and often fatal uncommon conditions with a high subjacent genetic origin. Since RD are not prevalent, knowledge regarding these diseases among health care providers and health students is scarce. The management of RD is often inadequate and precarious. Therefore, the aim of the present study is to assess the degree of knowledge, perceptions and attitudes of healthcare practitioners and students in Mexico. Herein we present a reliable questionnaire to assess the degree of knowledge, perceptions, awareness and attitudes of healthcare practitioners and students in Mexico with regard to RDs. The pilot study showed satisfactory levels of knowledge and significant differences in perceptions, awareness and attitudes among the study groups.
