A new patient registry for Chagas disease
2020; Public Library of Science; Volume: 14; Issue: 10 Linguagem: Inglês
10.1371/journal.pntd.0008418
ISSN1935-2735
AutoresPeter J. Hotez, María Elena Bottazzi, Nathalie Strub‐Wourgaft, Sergio Sosa‐Estáni, Faustino Torrico, Leire Pajín, Marcelo Abril, Javier Sancho,
Tópico(s)Parasites and Host Interactions
ResumoThere is urgency to establish a new and comprehensive patient registry for the millions of people who live in vulnerable social conditions with Chagas disease.First established in the early 1990s, today, national cancer registries in both the United States and Europe contribute to our understanding of the natural history of cancer and play an important role in improving patient treatment and prevention outcomes.In the US, the National Program of Cancer Registries (NPCR) was created by Congress in 1992, covering 46 states (in addition to the District of Columbia, Puerto Rico, and US Pacific and Virgin Islands), and administered by the US Centers for Disease Control and Prevention (CDC) [1,2].In addition, the US National Cancer Institute (NCI) administers a second registry known as the Surveillance, Epidemiology, and End Results (SEER).Both registries collect information for the entire US population.According to the CDC, this extensive coverage at the national level "enables researchers, clinicians, policy makers, public health professionals, and members of the public to monitor the burden of cancer, evaluate the successes of programs, and identify additional needs for cancer prevention and control efforts at national, state, and local levels" [1].The registries also provide high quality data to evaluate shifting trends in cancer over time, geographic variations in local cancer incidence, and specific at risk populations, especially among ethnic groups [3].Across Europe, a European Network of Cancer Registries (ENCR) performs similar functions [4].It was preceded by the longitudinal Framingham Heart cohort study, which was initiated in the US in 1948 and identifed the risk factors associated with the development of cardiovascular coronary disease, which were relevant to develop prevention programs [5].Today, disease registries are also not restricted to cancer.For instance, the US National Institutes of Health either oversees or maintains registries for a variety of chronic illnesses, including Alzheimer's disease, cerebral palsy, congenital heart and muscle diseases, cystic fibrosis, drug induced liver disease, lupus, and several rare diseases, among others [6].Another case to highlight among infectious diseases is HIV-AIDS surveillance [7,8].This started by reporting AIDS and allowed us to establish clinical guidelines and the initial elements of disease epidemiology.Later, following the implementation of antiretroviral drug therapy, it facilitated HIV-AIDS disease notification and, ultimately, a better understanding of
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