An Exploratory Survey on the Care for Ataxic Patients in the American Continents and the Caribbean.

ABSTRACT: Little is known about access of rare disease carriers to health care. To increase this knowledge, the Pan American Hereditary Ataxia Network (PAHAN) conducted an exploratory survey about care for hereditary ataxias in American continents and the Caribbean. A questionnaire was sent to health professionals about the hereditary ataxias identified; access to care; and local teaching and research. The number of ataxics under current care per 100,000 inhabitants was subtracted from the expected overall prevalence of 6/100,000, to estimate the prevalence of uncovered ataxic patients. Local Human Development Indexes (HDI) were used to measure socio-economic factors. Twenty-six sites participated. Twelve sites had very high, 13 had high, and one site had medium HDI. Participants reported on 2239 an

SUBMITTER: Jardim LB 

PROVIDER: S-EPMC10461795 | biostudies-literature | 2023 Aug

REPOSITORIES: biostudies-literature