PAHAN survey: access of patients with hereditary ataxias to diagnosis and management in the American continents and the Caribbean

- Define access of patients with hereditary ataxias (HA) to diagnosis and management in (Latin) America

Pan American Hereditary Ataxia Network (PAHAN) proposes to perform a survey among neurologists and geneticists from American countries, especially those from Latin America, to define what is the access of patients with hereditary ataxias (HA) to diagnosis and management. The survey will ask about: the accessibility of care for HA patients in different countries; if there are any policies set by the governments (strategies for identification and prevention, diagnosis and early intervention), what is the availability for stages and teaching courses in HA for residents in Neurology; what genetic tests and MRIs are available, and their cost coverage; availability of genetic counseling, multidisciplinary teams and technical devices in the Health systems. With this survey, we also intend to bring ataxia professionals closer to both PAHAN and SCA Global, helping both initiatives to truly become comprehensive and universal in their scope.

We are looking for:
healthcare professionals based in the Americas and involved in the care of ataxic patients

Cohorts used All hereditary ataxias
Funding available? To be sought
Trial readiness category 1:   basic prerequisites for trial readiness

Contact persons:
Laura Bannach Jardim
Universidade Federal do Rio Grande do Sul, Porte Alegre, Brazil

Further project partners:
Christopher Gomez
University of Chicago, Chicago, USA
Jonathan Javier Magaña Aguirre
Instituto Nacional de Rehabilitación Luis Guillermo Ibarra, Ciudad de Mexico, Mexico
Sheng-Han Kuo
University of Columbia, New York, USA
José Luiz Pedroso
Universidade Federal do Estado de São Paulo, São Paulo, Brazil
Roberto Rodríguez-Labrada
Centro para la Investigación y Rehabilitación de las Ataxias Hereditarias, Holguin, Cuba
Juan Fernandez Ruiz
Universidad Nacional Autonoma de Mexico, Ciudad de Mexico, Mexico
Luis Velázquez-Pérez
Cuban Academy of Sciences, Havana, Cuba