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1.
Thromb Haemost ; 122(3): 386-393, 2022 03.
Artigo em Inglês | MEDLINE | ID: mdl-33984866

RESUMO

BACKGROUND: Warfarin remains widely used and a key comparator in studies of other direct oral anticoagulants. As longer-than-needed warfarin prescriptions are often provided to allow for dosing adjustments according to international normalized ratios (INRs), the common practice of using a short allowable gap between dispensings to define warfarin discontinuation may lead to substantial misclassification of warfarin exposure. We aimed to quantify such misclassification and determine the optimal algorithm to define warfarin discontinuation. METHODS: We linked Medicare claims data from 2007 to 2014 with a multicenter electronic health records system. The study cohort comprised patients ≥65 years with atrial fibrillation and venous thromboembolism initiating warfarin. We compared results when defining warfarin discontinuation by (1) different gaps (3, 7, 14, 30, and 60 days) between dispensings and (2) having a gap ≤60 days or bridging larger gaps if there was INR ordering at least every 42 days (60_INR). Discontinuation was considered misclassified if there was an INR ≥2 within 7 days after the discontinuation date. RESULTS: Among 3,229 patients, a shorter gap resulted in a shorter mean follow-up time (82, 95, 117, 159, 196, and 259 days for gaps of 3, 7, 14, 30, 60, and 60_INR, respectively; p < 0.001). Incorporating INR (60_INR) can reduce misclassification of warfarin discontinuation from 68 to 4% (p < 0.001). The on-treatment risk estimation of clinical endpoints varied significantly by discontinuation definitions. CONCLUSION: Using a short gap between warfarin dispensings to define discontinuation may lead to substantial misclassification, which can be improved by incorporating intervening INR codes.


Assuntos
Fibrilação Atrial , Tromboembolia Venosa , Varfarina/uso terapêutico , Suspensão de Tratamento/estatística & dados numéricos , Idoso , Anticoagulantes/uso terapêutico , Fibrilação Atrial/sangue , Fibrilação Atrial/diagnóstico , Fibrilação Atrial/tratamento farmacológico , Codificação Clínica/métodos , Codificação Clínica/organização & administração , Registros Eletrônicos de Saúde/estatística & dados numéricos , Feminino , Humanos , Coeficiente Internacional Normatizado/métodos , Masculino , Medicare/estatística & dados numéricos , Padrões de Prática Médica , Estados Unidos , Tromboembolia Venosa/sangue , Tromboembolia Venosa/diagnóstico , Tromboembolia Venosa/tratamento farmacológico
2.
Fertil Steril ; 115(1): 22-28, 2021 01.
Artigo em Inglês | MEDLINE | ID: mdl-33413957

RESUMO

Despite years of recognition that many physicians are woefully unprepared to face challenges regarding the business of medicine, marginal progress has been made. In this piece, we aim to provide the contemporary reproductive medicine physician with an understanding of billing, coding, and, most importantly, cost containment for a typical fertility practice. It is critical for modern practices to not forego hard-earned revenue to insurance companies or not be aware of critical rules and regulations. While running a successful fertility practice requires good medical care, a profitable practice is necessary for overall long-term success. This article provides a brief history of medical insurance and billing, explains the process of updating billing codes, and reviews the revenue cycle, cost containment, and contract negotiations with insurance companies.


Assuntos
Administração Financeira , Reembolso de Seguro de Saúde , Gerenciamento da Prática Profissional/tendências , Medicina Reprodutiva , Codificação Clínica/economia , Codificação Clínica/história , Codificação Clínica/organização & administração , Codificação Clínica/tendências , Administração Financeira/economia , Administração Financeira/história , Administração Financeira/organização & administração , Administração Financeira/tendências , Ocupações em Saúde/história , Ocupações em Saúde/tendências , História do Século XX , História do Século XXI , Humanos , Reembolso de Seguro de Saúde/economia , Reembolso de Seguro de Saúde/história , Reembolso de Seguro de Saúde/tendências , Gerenciamento da Prática Profissional/economia , Gerenciamento da Prática Profissional/história , Gerenciamento da Prática Profissional/organização & administração , Medicina Reprodutiva/economia , Medicina Reprodutiva/história , Medicina Reprodutiva/organização & administração , Medicina Reprodutiva/tendências
3.
Med Care ; 58(12): 1044-1050, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-33003052

RESUMO

BACKGROUND: The Functional Comorbidity Index (FCI) was developed for community-based adult populations, with function as the outcome. The original FCI was a survey tool, but several International Classification of Diseases (ICD) code lists-for calculating the FCI using administrative data-have been published. However, compatible International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM) and ICD-10-CM versions have not been available. OBJECTIVE: We developed ICD-9-CM and ICD-10-CM diagnosis code lists to optimize FCI concordance across ICD lexicons. RESEARCH DESIGN: We assessed concordance and frequency distributions across ICD lexicons for the FCI and individual comorbidities. We used length of stay and discharge disposition to assess continuity of FCI criterion validity across lexicons. SUBJECTS: State Inpatient Databases from Arizona, Colorado, Michigan, New Jersey, New York, Utah, and Washington State (calendar year 2015) were obtained from the Healthcare Cost and Utilization Project. State Inpatient Databases contained ICD-9-CM diagnoses for the first 3 calendar quarters of 2015 and ICD-10-CM diagnoses for the fourth quarter of 2015. Inpatients under 18 years old were excluded. MEASURES: Length of stay and discharge disposition outcomes were assessed in separate regression models. Covariates included age, sex, state, ICD lexicon, and FCI/lexicon interaction. RESULTS: The FCI demonstrated stability across lexicons, despite small discrepancies in prevalence for individual comorbidities. Under ICD-9-CM, each additional comorbidity was associated with an 8.9% increase in mean length of stay and an 18.5% decrease in the odds of a routine discharge, compared with an 8.4% increase and 17.4% decrease, respectively, under ICD-10-CM. CONCLUSION: This study provides compatible ICD-9-CM and ICD-10-CM diagnosis code lists for the FCI.


Assuntos
Codificação Clínica/organização & administração , Comorbidade , Indicadores Básicos de Saúde , Classificação Internacional de Doenças/normas , Adolescente , Adulto , Fatores Etários , Idoso , Idoso de 80 Anos ou mais , Codificação Clínica/normas , Bases de Dados Factuais/estatística & dados numéricos , Feminino , Humanos , Tempo de Internação/estatística & dados numéricos , Masculino , Pessoa de Meia-Idade , Alta do Paciente/estatística & dados numéricos , Características de Residência , Fatores Sexuais , Estados Unidos , Adulto Jovem
4.
Med Care ; 58(12): 1037-1043, 2020 12.
Artigo em Inglês | MEDLINE | ID: mdl-32925453

RESUMO

BACKGROUND: The inclusion of Z-codes for social determinants of health (SDOH) in the 10th revision of the International Classification of Diseases (ICD-10) may offer an opportunity to improve data collection of SDOH, but no characterization of their utilization exists on a national all-payer level. OBJECTIVE: To examine the prevalence of SDOH Z-codes and compare characteristics of patients with and without Z-codes and hospitals that do and do not use Z-codes. RESEARCH DESIGN: Retrospective cohort study using 2016 and 2017 National Inpatient Sample. PARTICIPANTS: Total of 14,289,644 inpatient hospitalizations. MEASURES: Prevalence of SDOH Z-codes (codes Z55-Z65) and descriptive statistics of patients and hospitals. RESULTS: Of admissions, 269,929 (1.9%) included SDOH Z-codes. Average monthly SDOH Z-code use increased across the study period by 0.01% per month (P<0.001). The cumulative number and proportion of hospitals that had ever used an SDOH Z-code also increased, from 1895 hospitals (41%) in January 2016 to 3210 hospitals (70%) in December 2017. Hospitals that coded at least 1 SDOH Z-code were larger, private not-for-profit, and urban teaching hospitals. Compared with admissions without an SDOH Z-code, admissions with them were for patients who were younger, more often male, Medicaid recipients or uninsured. A higher proportion of admissions with SDOH Z-codes were for mental health (44.0% vs. 3.3%, P<0.001) and alcohol and substance use disorders (9.6% vs. 1.1%, P<0.001) compared with those without. CONCLUSIONS: The uptake of SDOH Z-codes has been slow, and current coding is likely poorly reflective of the actual burden of social needs experienced by hospitalized patients.


Assuntos
Codificação Clínica/organização & administração , Hospitalização/estatística & dados numéricos , Classificação Internacional de Doenças/normas , Determinantes Sociais da Saúde/estatística & dados numéricos , Adolescente , Adulto , Fatores Etários , Idoso , Criança , Pré-Escolar , Codificação Clínica/normas , Feminino , Número de Leitos em Hospital/estatística & dados numéricos , Humanos , Lactente , Recém-Nascido , Masculino , Pessoa de Meia-Idade , Propriedade/estatística & dados numéricos , Pobreza/estatística & dados numéricos , Características de Residência/estatística & dados numéricos , Estudos Retrospectivos , Fatores Sexuais , Fatores Socioeconômicos , Estados Unidos , Adulto Jovem
6.
Med Intensiva (Engl Ed) ; 44(1): 36-45, 2020.
Artigo em Inglês, Espanhol | MEDLINE | ID: mdl-31542182

RESUMO

Sepsis is a syndromic entity with high prevalence and mortality. The management of sepsis is standardized and exhibits time-dependent efficiency. However, the management of patients with sepsis is complex. The heterogeneity of the forms of presentation can make it difficult to detect and manage such cases, in the same way as differences in training, professional competences or the availability of health resources. The Advisory Commission for Patient Care with Sepsis (CAAPAS), comprising 7 scientific societies, the Emergency Medical System (SEM) and the Catalan Health Service (CatSalut), have developed the Interhospital Sepsis Code (CSI) in Catalonia (Spain). The general objective of the CSI is to increase awareness, promote early detection and facilitate initial care and interhospital coordination to attend septic patients in a homogeneous manner throughout Catalonia.


Assuntos
Comitês Consultivos/organização & administração , Codificação Clínica/normas , Sepse/diagnóstico , Sepse/terapia , Fatores Etários , Algoritmos , Circulação Sanguínea , Codificação Clínica/organização & administração , Diagnóstico Precoce , Emergências , Hospitais/normas , Humanos , Anamnese , Meningismo/diagnóstico , Modelos Organizacionais , Insuficiência de Múltiplos Órgãos/diagnóstico , Exame Físico , Síndrome do Desconforto Respiratório/diagnóstico , Ressuscitação/normas , Sepse/sangue , Choque Séptico/sangue , Choque Séptico/diagnóstico , Choque Séptico/terapia , Espanha/epidemiologia , Inconsciência/diagnóstico
7.
J Gen Intern Med ; 34(10): 2150-2158, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31367872

RESUMO

BACKGROUND: Although collaborative care (CoCM) is an evidence-based and widely adopted model, reimbursement challenges have limited implementation efforts nationwide. In recent years, Medicare and other payers have activated CoCM-specific codes with the primary aim of facilitating financial sustainability. OBJECTIVE: To investigate and describe the experiences of early adopters and explorers of Medicare's CoCM codes. DESIGN AND PARTICIPANTS: Fifteen interviews were conducted between October 2017 and May 2018 with 25 respondents representing 12 health care organizations and 2 payers. Respondents included dually boarded medicine/psychiatry physicians, psychiatrists, primary care physicians (PCPs), psychologists, a registered nurse, administrative staff, and billing staff. APPROACH: A semi-structured interview guide was used to address health care organization characteristics, CoCM services, patient consent, CoCM operational components, and CoCM billing processes. All interviews were recorded, transcribed, coded, and analyzed using a content analysis approach conducted jointly by the research team. KEY RESULTS: Successful billing required buy-in from key, interdisciplinary stakeholders. In planning for CoCM billing implementation, several organizations hired licensed clinical social workers (LICSWs) as behavioral health care managers to maximize billing flexibility. Respondents reported a number of consent-related difficulties, but these were not primary barriers. Workflow changes required for billing the CoCM codes (e.g., tracking cumulative treatment minutes, once-monthly code entry) were described as arduous, but also stimulated creative solutions. Since CoCM codes incorporate the work of the psychiatric consultant into one payment to primary care, organizations employed strategies such as inter-departmental ledger transfers. When challenges arose from variations in the local payer mix, some organizations billed CoCM codes exclusively, while others elected to use a mixture of CoCM and traditional fee-for-service (FFS) codes. For most organizations, it was important to demonstrate financial sustainability from the CoCM codes. CONCLUSIONS: With deliberate planning, persistence, and widespread organizational buy-in, successful utilization of newly available FFS CoCM billing codes is achievable.


Assuntos
Codificação Clínica/organização & administração , Prestação Integrada de Cuidados de Saúde/organização & administração , Atenção Primária à Saúde/organização & administração , Prestação Integrada de Cuidados de Saúde/economia , Prática Clínica Baseada em Evidências/organização & administração , Planos de Pagamento por Serviço Prestado/organização & administração , Humanos , Liderança , Medicare , Serviços de Saúde Mental/organização & administração , Pesquisa Qualitativa , Estados Unidos
8.
Pharmacoepidemiol Drug Saf ; 28(10): 1395-1404, 2019 10.
Artigo em Inglês | MEDLINE | ID: mdl-31464008

RESUMO

PURPOSE: To establish a new medical information database network (designated MID-NET® ) to provide real-world data for drug safety assessments in Japan. METHODS: This network was designed and developed by the Ministry of Health, Labour and Welfare and the Pharmaceuticals and Medical Devices Agency in collaboration with 23 hospitals from 10 healthcare organizations across Japan. MID-NET® is a distributed and closed network system that connects all collaborative organizations through a central data center. A wide variety of data are available for analyses, including clinical and administrative information. Several coding standards are used to standardize the data stored in MID-NET® to allow the integration of information originating from different hospitals. A rigorous and consistent quality management system was implemented to ensure that MID-NET® data are of high quality and meet Japanese regulatory standards (good post-marketing study practice and related guidelines). RESULTS: MID-NET® was successfully established as a reliable and valuable medical information database and was officially launched in April 2018. High data quality with almost 100% consistency was confirmed between original data in hospitals and the data stored in MID-NET® . A major advantage is that approximately 260 clinical laboratory test results are available for analysis. CONCLUSIONS: MID-NET® is expected to be a major data source for drug safety assessments in Japan. Experiences and best practices established in MID-NET® may provide a model for the future development of similar database networks.


Assuntos
Gerenciamento de Dados/organização & administração , Bases de Dados Factuais , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/epidemiologia , Farmacovigilância , Vigilância de Produtos Comercializados/métodos , Codificação Clínica/organização & administração , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/diagnóstico , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/etiologia , Efeitos Colaterais e Reações Adversas Relacionados a Medicamentos/prevenção & controle , Registros Eletrônicos de Saúde/organização & administração , Humanos , Japão/epidemiologia , Reprodutibilidade dos Testes
9.
Rev Epidemiol Sante Publique ; 67(4): 213-221, 2019 Jul.
Artigo em Francês | MEDLINE | ID: mdl-31196581

RESUMO

BACKGROUND: Since 2008, in France, hospital funding is determined by the nature of activities provided (activity-based funding). Quality control of hospital activity coding is essential to optimize hospital remuneration. There is a need for reliable tools to allocate human resources wisely in order to improve these controls. METHODS: The main objective of this study was to identify the determinants of time needed by medical information technicians to control hospital activity coding in a Regional Hospital Center. From March 2016 to the beginning of January 2017, medical information technicians reported the time they spent on each quality control, and the time they needed when they had to code the entire stay. Multiple linear regressions were performed to identify the determinants of quality control or coding duration. A split sample validation was used: model was created on one half of the sample and validated on the remaining half. RESULTS: Among the controls, 5431 were included in the analysis of determinants of control duration (2715 kept aside for model validation). Seven determinants have been identified (stay duration, level of complexity, month of control, type of control, medical information technician, rank of classing information, and major diagnostic category). The correlation coefficient between predicted and real control duration was 0.71 (P<10-4); 808 stays were included in the analysis of determinants of coding duration (404 kept aside for model validation). Two determinants have been identified. The correlation coefficient, between predicted and real coding duration, was 0.47 (P<10-3). We performed the same multiple regression, on 2017 activity data, to estimate the weight of each hospital activity pole, regarding quality control of hospital activity coding. CONCLUSION: We succeeded in modeling time needed for quality control of hospital stays. These results helped to estimate human resources required for quality control of each hospital pole. Nevertheless, the second analysis did not give satisfactory results: we failed in modeling time needed to code hospital stays.


Assuntos
Codificação Clínica , Medicina Geral , Cirurgia Geral , Tempo de Internação , Informática Médica , Obstetrícia , Controle de Qualidade , Estudos de Casos e Controles , Codificação Clínica/organização & administração , Codificação Clínica/normas , Grupos Diagnósticos Relacionados/organização & administração , Grupos Diagnósticos Relacionados/normas , Registros Eletrônicos de Saúde/organização & administração , Registros Eletrônicos de Saúde/normas , Honorários Médicos , Feminino , França , Medicina Geral/organização & administração , Medicina Geral/normas , Cirurgia Geral/organização & administração , Cirurgia Geral/normas , Humanos , Tempo de Internação/economia , Tempo de Internação/estatística & dados numéricos , Masculino , Informática Médica/métodos , Informática Médica/organização & administração , Informática Médica/normas , Obstetrícia/organização & administração , Obstetrícia/normas , Indicadores de Qualidade em Assistência à Saúde/normas , Qualidade da Assistência à Saúde , Programas Médicos Regionais/organização & administração , Programas Médicos Regionais/normas , Fatores de Tempo , Carga de Trabalho
10.
Perspect Health Inf Manag ; 16(Spring): 1a, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31019430

RESUMO

On October 1, 2015, the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) was incorporated into the US public health system. Because of significant opposition and reservations expressed by stakeholders, while the proposed rule for ICD-10-CM adoption was issued in 2009, the transition did not occur until October 2015. The purpose of this study was to identify conversion initiatives used by a public health institution during the initial and subsequent stages of ICD-10-CM implementation, to help similar institutions address future unfunded healthcare data infrastructure mandates. The data collection for this study occurred from 2015 to 2018, encompassing 20 semistructured interviews with 13 department heads, managers, physicians, and coders. Research findings from this study identified several trends, disruptions, challenges, and lessons learned that might support the industry with strategies to foster success for the transition to future coding revisions (i.e., ICD-11).


Assuntos
Codificação Clínica/organização & administração , Classificação Internacional de Doenças/normas , Administração em Saúde Pública/normas , Codificação Clínica/normas , Humanos , Capacitação em Serviço/organização & administração , Reprodutibilidade dos Testes , Estados Unidos
12.
Health Phys ; 115(5): 652-656, 2018 11.
Artigo em Inglês | MEDLINE | ID: mdl-30260857

RESUMO

A decade ago, the nuclear power industry in the United States was on the verge of a nuclear renaissance with the potential to create jobs, funding streams, and great demand for radiation protection personnel. However, based on the high capital investment cost of building and licensing nuclear reactors and declining fossil fuel prices, the renaissance did not reach its full potential. Radiation protection initiatives were developed to bring attention to the profession in order to increase funding for the health physics community during these times of declining resources. It is now essential that the community be innovative in how it uses existing funds and acquires resources. This paper describes a radiation protection computer code program that uses existing resources and international funding to sustain computer codes and tools used in the health physics profession. The program is called the U.S. Nuclear Regulatory Commission's Radiation Protection Computer Code Analysis and Maintenance Program or RAMP. This collaborative, innovative, and transformative model can be followed by others seeking to alleviate the resource issues that exist within the health physics field.


Assuntos
Codificação Clínica , Física Médica/normas , Proteção Radiológica/normas , Codificação Clínica/métodos , Codificação Clínica/organização & administração , Codificação Clínica/normas , Regulamentação Governamental , Física Médica/organização & administração , Humanos , Software/normas , Estados Unidos
14.
Emergencias (St. Vicenç dels Horts) ; 30(1): 41-44, feb. 2018. tab
Artigo em Espanhol | IBECS | ID: ibc-169894

RESUMO

Objetivos. Estudiar si existen diferencias en la asignación de gravedad entre las versiones 98 y 2005 -actualización 2008- de la escala Abbreviated Injury Scale (AIS) y determinar si estas posibles diferencias podrían tener repercusión en la definición de paciente traumatológico grave. Método. Estudio descriptivo de una serie de casos con análisis transversal que incluyó a pacientes ingresados por lesiones debidas a causas externas en dos hospitales españoles, llevado a cabo entre febrero de 2012 y febrero de 2013. Se calculó el Injury Severity Score (ISS) y el New Injury Severity Score (NISS) de cada uno de los casos con ambas versiones de la escala AIS. Resultados. La muestra estuvo compuesta por 699 casos, con una edad media de 52,7 (DE 29,2) años, de los cuales 388 (55,5%) fueron varones. Se obtuvo una mayor clasificación de pacientes graves con la versión AIS 98, tanto para el ISS (2,6%) como el NISS (2,9%). Conclusiones. La versión AIS 2005 -actualización 2008- clasifica un menor número de pacientes como graves en comparación con la versión AIS 98 (AU)


Objectives. To explore differences in severity classifications according to 2 versions of the Abbreviated Injury Scale (AIS): version 2005 (the 2008 update) and the earlier version 98. To determine whether possible differences might have an impact on identifying severe trauma patients. Methods. Descriptive study and cross-sectional analysis of a case series of patients admitted to two Spanish hospitals with out-of-hospital injuries between February 2012 and February 2013. For each patient we calculated the Injury Severity Score (ISS), the New Injury Severity Score (NISS), and the AIS scores according to versions 98 and 2005. Results. The sample included 699 cases. The mean Severity (SD) age of patients was 52.7 (29.2) years, and 388 (55.5%) were males. Version 98 of the AIS correlated more strongly with both the ISS (2.6%) and the NISS (2.9%). Conclusion. The 2008 update of the AIS (version 2005) classified fewer trauma patients than version 98 at the severity levels indicated by the ISS and NISS (AU)


Assuntos
Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Traumatologia/organização & administração , Índices de Gravidade do Trauma , Codificação Clínica/organização & administração , Estudos Transversais/métodos , Codificação Clínica/normas , Codificação Clínica
15.
Perspect Health Inf Manag ; 14(Winter): 1f, 2017.
Artigo em Inglês | MEDLINE | ID: mdl-28566995

RESUMO

OBJECTIVE: The objective of this study is to discuss and analyze the use of automated SNOMED CT clinical coding in clinical decision support systems (CDSSs) for preventive care. The central question that this study seeks to answer is whether the utilization of SNOMED CT in CDSSs can improve preventive care. METHOD: PubMed, Google Scholar, and Cochrane Library were searched for articles published in English between 2001 and 2012 on SNOMED CT, CDSS, and preventive care. OUTCOME MEASURES: Outcome measures were the sensitivity or specificity of SNOMED CT coded data and the positive predictive value or negative predictive value of SNOMED CT coded data. Additionally, we documented the publication year, research question, study design, results, and conclusions of these studies. RESULTS: The reviewed studies suggested that SNOMED CT successfully represents clinical terms and negated clinical terms. CONCLUSION: The use of SNOMED CT in CDSS can be considered to provide an answer to the problem of medical errors as well as for preventive care in general. Enhancement of the modifiers and synonyms found in SNOMED CT will be necessary to improve the expected outcome of the integration of SNOMED CT with CDSS. Moreover, the application of the tree-augmented naïve (TAN) Bayesian network method can be considered the best technique to search SNOMED CT data and, consequently, to help improve preventive health services.


Assuntos
Codificação Clínica/organização & administração , Sistemas de Apoio a Decisões Clínicas/organização & administração , Medicina Preventiva/organização & administração , Systematized Nomenclature of Medicine , Teorema de Bayes , Codificação Clínica/normas , Sistemas de Apoio a Decisões Clínicas/normas , Humanos , Erros Médicos/prevenção & controle , Medicina Preventiva/normas , Sensibilidade e Especificidade
19.
Isr Med Assoc J ; 18(6): 359-63, 2016 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-27468531

RESUMO

The European Union defines rare diseases (RDs) as life-threatening or chronically debilitating conditions whose prevalence is less than 5 per 10,000. Moreover, for many RDs, including those of genetic origin, combined efforts are required to reduce morbidity or perinatal and early mortality, and address the considerable decline in an individual's quality of life and socioeconomic potential. Their specificities, i.e., a limited number of patients and scarcity of relevant knowledge and expertise, make RDs a unique condition which requires wide cooperation at a supranational level. Many steps were therefore taken to develop a network of European Reference Centers and to improve RDs coding and classification. In Italy, the RDs issue was addressed in 2001 with the development of a national network and a national registry coordinated by the National Center for RDs of the Italian National Institute of Health. Registries are an important resource for the development of appropriate public health policies and research on specific RDs. Research on RDs is essential for the development of novel therapeutic approaches and requires the involvement of scientific societies and patient organizations. Nevertheless, the management of patients with a chronic-RD requires a qualified care network. The network for RDs of Piedmont and the Aosta Valley (northwest Italy) represents an example of health care organization based on the availability of advanced therapies close to the patient's home.


Assuntos
Gerenciamento Clínico , Cooperação Internacional , Qualidade de Vida , Doenças Raras , Codificação Clínica/organização & administração , Europa (Continente)/epidemiologia , Política de Saúde , Humanos , Itália/epidemiologia , Doenças Raras/classificação , Doenças Raras/epidemiologia , Doenças Raras/psicologia , Doenças Raras/terapia , Sistema de Registros
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