The A-T Children’s Project is funding Beatriz Tavares Costa-Carvalho, MD and her colleagues to learn more about A-T in the Latin American population with a new grant entitled Ataxia-Telangiectasia: Epidemiological Survey in Latin America.
Studying how a disease affects people over time is important not just to understanding the nature of the disease and its various facets, but is also critical to conducting clinical trials to treat the disease. Clinician scientists call these types of long term studies of disease “natural history studies.” Knowledge regarding the natural history of A-T in Latin American has been lacking, but Dr. Carvalho’s study will fill this gap.
Dr. Carvalho and her team plan to collect clinical and laboratory information on individuals with A-T in South America, Central America, Mexico, Cuba and the Dominican Republic. Their study will include individuals from different socioeconomic backgrounds and from different geographical areas. The team will also learn how the inherent challenges to accessing specialized care in Latin America impact people with A-T.
Dr. Carvalho will work to ensure that their data are shared with the newly established Global A-T Family Data Platform, which has the potential to help researchers make new discoveries and accelerate the development of therapies for A-T.
Dr. Carvalho’s study will help improve the diagnosis and multidisciplinary care of individuals with A-T in Latin America, and will improve our understanding of A-T globally.