SARS‐CoV ‐2 pandemic in the Brazilian community of rare diseases: A patient reported survey
| Autor: | Carolina Fischinger Moura de Souza, Ida Vanessa Doederlein Schwartz, Matheus Vernet Machado Bressan Wilke, Natan Monsores, Decio Brunoni, Dévora N Randon, Dafne Dain Gandelman Horovitz |
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| Rok vydání: | 2021 |
| Předmět: |
Telemedicine
medicine.medical_specialty Distancing coronavirus Computer-assisted web interviewing COVID‐19 Surveys and Questionnaires Health care Pandemic Genetics Humans Medicine genetic disorders Genetics(clinical) Patient Reported Outcome Measures Pandemics Research Articles Genetics (clinical) SARS-CoV-2 business.industry Social distance COVID-19 rare diseases Family medicine Residence business Brazil Research Article Rare disease |
| Zdroj: | American Journal of Medical Genetics Part C: Seminars in Medical Genetics American Journal of Medical Genetics. Part C, Seminars in Medical Genetics |
| ISSN: | 1552-4876 1552-4868 |
| DOI: | 10.1002/ajmg.c.31883 |
| Popis: | The COVID‐19 pandemic has led to a reorganization of health systems to prioritize the fight against the virus. The adoption of social distancing interfered with the flow of existing policies, and may thus negatively affect the most vulnerable groups, such as the rare disease community. Aimming at characterizing the perception of the impact of COVID‐19 on the health care of the Brazilian rare disease community, an online questionnaire addressed to patients with rare diseases and their caregivers was disseminated in the Brazilian territory between June 1st to July 5th, 2020. The questions dealt with the sanitary measures adopted; access to medical services; and mental suffering during the pandemic. The survey was answered by 1,466 participants ( |
| Databáze: | OpenAIRE |
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