Publicação
Boas práticas em doenças raras : da conceção à implementação de registos de doentes
| Resumo: | Rare Diseases (RD) are characterized by exhibit low prevalence and high complexity, interfering with patient life quality, as with their families or nearby persons. They can cause chronic disability, or even be fatal. Even the “rarity” factor that characterized them it’s known that they affect millions of people all around the world. The degree of knowledge about RD can determine how fast they are diagnosed, and contributes to improve medical and social coverage for the patients. However the scientific community has come across with difficulties on RD field, namely dearth of research, factor that is directly connected to RD own characteristics that define them. Also that the difficulty on this area of investigation has it culminates on gaps on knowledge about the diseases and options/answers about treatment. Becomes essential to rethink about Patients Registries, in the field of RD, as essential and central tools on the scope and approach for this diseases. It’s usual, among authors, that Patient Registries (PR) are an information system organized with pre-determined purpose(s) – scientific, clinical and/or political – that allow gathering data. On the field of RD they present a high level of knowledge allowing to gather data and evaluate specific outcomes for this complex and scarce population, and are a fundamental complement on research field (basic and clinical), planning and building social and health politics.The theme Patient Registries in the field of RD is currently emerging, yet rarely addressed, becoming essential the reflexion and discussion on this area. On this monograph, build on bibliographic research, wonders the role of the creation of registries for patients with rare diseases and it’s intended as targets: define concepts: rare diseases, patient registries and patients with RD registries; reflect about the process of building RD registries (from conception to implementation); point on how RD Registries can be used as support to clinical decision and a privileged mean to health promotion. |
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| Autores principais: | Filipe, Ana do Rosário Loureiro |
| Assunto: | Doenças raras Registos de doentes |
| Ano: | 2014 |
| País: | Portugal |
| Tipo de documento: | dissertação de mestrado |
| Tipo de acesso: | acesso restrito |
| Instituição associada: | Universidade de Lisboa |
| Idioma: | português |
| Origem: | Repositório da Universidade de Lisboa |
| Resumo: | Rare Diseases (RD) are characterized by exhibit low prevalence and high complexity, interfering with patient life quality, as with their families or nearby persons. They can cause chronic disability, or even be fatal. Even the “rarity” factor that characterized them it’s known that they affect millions of people all around the world. The degree of knowledge about RD can determine how fast they are diagnosed, and contributes to improve medical and social coverage for the patients. However the scientific community has come across with difficulties on RD field, namely dearth of research, factor that is directly connected to RD own characteristics that define them. Also that the difficulty on this area of investigation has it culminates on gaps on knowledge about the diseases and options/answers about treatment. Becomes essential to rethink about Patients Registries, in the field of RD, as essential and central tools on the scope and approach for this diseases. It’s usual, among authors, that Patient Registries (PR) are an information system organized with pre-determined purpose(s) – scientific, clinical and/or political – that allow gathering data. On the field of RD they present a high level of knowledge allowing to gather data and evaluate specific outcomes for this complex and scarce population, and are a fundamental complement on research field (basic and clinical), planning and building social and health politics.The theme Patient Registries in the field of RD is currently emerging, yet rarely addressed, becoming essential the reflexion and discussion on this area. On this monograph, build on bibliographic research, wonders the role of the creation of registries for patients with rare diseases and it’s intended as targets: define concepts: rare diseases, patient registries and patients with RD registries; reflect about the process of building RD registries (from conception to implementation); point on how RD Registries can be used as support to clinical decision and a privileged mean to health promotion. |
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