Voluntary associations played a decisive role during the SARS-CoV-2 pandemic. This contribution reports on the experience of the Torino Street Care project, whose members carried out swabs in informal facilities, visits,...Voluntary associations played a decisive role during the SARS-CoV-2 pandemic. This contribution reports on the experience of the Torino Street Care project, whose members carried out swabs in informal facilities, visits, drug distribution, reading examinations, and orientation interviews. They also provided social, legal, or bureaucratic help, distributed food and collaborated in the vaccination campaign. These activities enabled a relationship of trust to be created with the migrant population in the Piedmont Region (Northern Italy), also thanks to the clarity and the precision of the communication the volunteers had with the people they welcomed.
This paper describes the experience carried out in a general hospital, implemented in collaboration with a city network of associations involved in the care of migrant populations. Considering the vulnerability of these...This paper describes the experience carried out in a general hospital, implemented in collaboration with a city network of associations involved in the care of migrant populations. Considering the vulnerability of these populations, the difficulty of access to healthcare facilities, and the linguistic and cultural barriers, an organisational model was designed characterised by the concentration of highly complex care (hub centre) supported by a network of peripheral reception centres (spoke centres) responsible for selecting patients and sending them to the centre of reference with the aim of offering screening for sexually transmitted infections, tuberculosis, taking charge of pathologies, including non-infectious ones, treatment, and follow-up. The effectiveness of the model was measured in relation to the continuum of care and its effectiveness with reference to the Joint Commission International guidelines.
During the spread of SARS-CoV-2 virus, contact tracing proved to be a very effective public health tool. Within the local health authority of Trapani (Sicily Region, Southern Italy), contact tracing was managed by physic...During the spread of SARS-CoV-2 virus, contact tracing proved to be a very effective public health tool. Within the local health authority of Trapani (Sicily Region, Southern Italy), contact tracing was managed by physician, prevention technicians, and administrative from the Health Prevention Department who were trained and updated during the evolution of the epidemic. Contact tracing has been extended to migrants who arrived in Trapani with the landings. Extended contact tracing had some critical factors related to language barriers, which reduced the effectiveness of the telephone contacts and psychological counseling during tracing, up to the loss of definition of high or low risk contacts among both migrants and rescuers. The team made up of workers from the Health Prevention Department, the Global Health Center, and Cultural Mediators was important in effectively managing the critical issues. The high number of cases occurred during the outbreak of COVID-19 in January 2022 has shown difficulties to support the contact tracing in this phase.
The present work describes the cumulative coverage curves by country of birth, sex, age, and area of residence of the adult population residing in the province of Reggio Emilia (Emilia-Romagna Region, Northern Italy).The...The present work describes the cumulative coverage curves by country of birth, sex, age, and area of residence of the adult population residing in the province of Reggio Emilia (Emilia-Romagna Region, Northern Italy).The analyses are stratified by country of birth into HDC (Highly Developed Country), mostly Italians, and HMPC (Highly Migration Pressure Country), as a proxy of migrant status, excluding deaths. Vaccinations carried out up to September 2022 and recorded in the information system were considered, including vaccinations performed outside the province. Vaccinations done abroad are not included when the information is incomplete or the type of vaccine is different from those administered in Italy.Vaccination coverage (%) by number of doses and estimated Hazard Ratio (HR) and related 95% confidence intervals (95%CI) are calculated using Cox models, adjusted for age and stratified by sex.A lower vaccination coverage was detected, delayed by a few weeks, among HMPC, but the differences in vaccination coverage are reversed when the different age structure of the two populations is taken into account. From the estimates of the Cox models, a higher propensity to vaccinate was noted among immigrants, in particular among women (women HR: 1.65; CI95% 1.52-1.78; men HR: 1.39; CI95% 1.28-1.52). Women were vaccinated first, but, at the end of the observation period, there were no particular differences in coverage between the two sexes, either among Italians or immigrants. Focusing on the area of origin, a strong propensity for vaccination was noted, particularly among who came from North Africa. In the mountain areas of the province, a lower propensity for vaccination was observed, perhaps explained by the greater distance of the vaccination centers or by a lower acceptability of the vaccine.
The COVID-19 pandemic has modified the burden of disease in the population in various ways, depending on different social and economic conditions. Consequently, the pandemic has amplified health disparities, especially a...The COVID-19 pandemic has modified the burden of disease in the population in various ways, depending on different social and economic conditions. Consequently, the pandemic has amplified health disparities, especially among the frail populations. During the pandemic, the incidence among immigrants showed a one- or two-week delay compared to natives, possibly due to delays in diagnosis and access to treatment. Health Authorities had to think new intervention strategies. As part of a project to contain the spread of SARS-CoV-2 among immigrants in Italy, training emerged as a strategic intervention objective. The training included project areas that assessed the impact of the pandemic and public health intervention on immigrants and incorporated best practices from local experiences. The training was addressed to healthcare and social workers and aimed at building institutional networks and skills in caring for vulnerable people. Additionally, the training course was designed to be adaptable and applicable in other emergency contexts.
Barchitta M, Colloca C, Giorgianni G
… +9 more, Cuccia M, Pantaleo V, Campisi E, Ojeda-Granados C, Manoli M, Leonardi A, Cernigliaro A, D'Amato S, Agodi A
BACKGROUND: the Coronavirus disease 2019 (COVID-19) pandemic may have aggravated existing social and healthcare inequalities among particular population groups, such as ethnic minorities, who showed increased susceptibil...BACKGROUND: the Coronavirus disease 2019 (COVID-19) pandemic may have aggravated existing social and healthcare inequalities among particular population groups, such as ethnic minorities, who showed increased susceptibility to SARS-CoV-2 infection. OBJECTIVES: to characterize risk profiles or determinants of delayed healthcare access, as well as knowledge, risk perception, behaviour, and social stigma concerning SARS-CoV-2 infection in the immigrant population in the city of Catania (Sicily Region, Southern Italy). DESIGN: pilot, descriptive study. SETTING AND PARTICIPANTS: the immigrant population in Catania. MAIN OUTCOMES MEASURES: an ad-hoc questionnaire was prepared and administered to the participants of the target population. In addition, a web-based data collection platform and a web-based survey addressed to healthcare providers were developed. RESULTS: 74 immigrant subjects (mean age: 39 years) voluntarily compiled the questionnaire with varying response rates per question: 77% of the participants were male, 59.5% were from Africa, 29.7% from Asia, 6.7% from South America, and 4.1% did not specify their origin. Fifty-three percent (35/66 responses) found it easy to access healthcare services. However, 25.8% (17/66 responses) found it difficult to understand written information concerning their health. Regarding vaccination services, 67.3% of subjects (35/62 responses) had no difficulty in receiving information on mandatory vaccinations and/or vaccination centres in Italy, and 79.7% (51/64 responses) were vaccinated against COVID-19. In relation to other primary prevention issues, 71.4% of participants (45/63 responses) stated they did not know or had never been tested for HIV, 64.4% (38/59 responses) declared they had not heard of or knew nothing about antibiotic resistance, and 30.4% (21/69 responses) had not heard or knew nothing about antibiotic use. CONCLUSIONS: health services seem to be accessible and effective among the immigrant population in Catania. However, identified determinants of delayed healthcare access included factors concerning mainly health literacy and possibly the socioeconomic status of the population studied. Primary prevention issues that need to be addressed due to low awareness or stigmatization among the immigrant population include antibiotic use and resistance, and infectious diseases such as HIV/AIDS.
Italy is a destination country for a growing international migration, accounting for 8.4% of the total population. The COVID-19 pandemic has increased the difficulties in accessing healthcare services among immigrants, a...Italy is a destination country for a growing international migration, accounting for 8.4% of the total population. The COVID-19 pandemic has increased the difficulties in accessing healthcare services among immigrants, and barriers due to linguistic and cultural differences had a significant impact during the pandemic. This paper presents the methodology used in the project 'Epidemiological surveillance and control of COVID-19 in metropolitan urban areas for the containment of SARS-CoV-2 circulation in the immigrant population in Italy', carried out with the technical and financial support of the Italian Ministry of Health. This methodology is aimed to identify and select statements available in the literature, transferable to the Italian context, on the topic of interventions deemed useful in reducing the impact of the COVID-19 pandemic on the foreign population in urban/metropolitan settings.In February 2022, a systematic search was conducted in databases such as Medline, Embase, and Web of Science, as well as on national and international websites (WHO, Italian Institute of Health, and CDC), and on 'RecMap' (included in the 'COVID19 Recommendations' website) to identify guidelines containing recommendations on the management and prevention of COVID-19 among immigrants. The selected recommendations were divided into intervention areas (infection control, vaccination, screening, planning and monitoring, healthcare systems). In the first phase, a group of researchers independently assessed the inclusion of recommendations through three rounds of consensus. The Appraisal of Guidelines for Research and Evaluation II (AGREE II) tool was used to assess the quality of the included guidelines. In the second phase, an external group of experts independently evaluated the relevance of the included recommendations using a Likert scale. The document is the result of a collaborative work based on evidence from the literature available until that time. The adaptation and adoption of recommendations already formulated by other international organizations on the topic of preparedness and response to the COVID-19 pandemic, evaluated through a consensus process with experts, can be a valid method aimed at producing documents to inform and guide those involved in the care of immigrants in Italy, as well as promoting inclusive forms of prevention in emergency contexts.
BACKGROUND: the spread of SARS-CoV-2 in the population has amplified the effects of health inequalities, particularly in the most vulnerable groups such as immigrants and refugees. An assessment of the intervention to co...BACKGROUND: the spread of SARS-CoV-2 in the population has amplified the effects of health inequalities, particularly in the most vulnerable groups such as immigrants and refugees. An assessment of the intervention to contain the COVID-19 in these population groups was essential to define new strategies for more equitable, inclusive, and effective health policies to on health. OBJECTIVES: to provide a systematic synopsis of the impact of interventions to contain the spread of SARS-CoV-2 in immigrants. METHODS: data sources included major bibliographic databases. Using a study protocol, already shared with the international scientific community, two independent researchers reviewed the citations, selected and evaluated the interventions studies. Due to the heterogeneity of the interventions, a narrative synthesis was carried out. RESULTS: three eligible studies were identified. The first study modelled the incidence of the disease in a refugee camp in Greece, based on an intervention of sectorialization of people that accessed to services, the use of masks, the early identification and isolation of cases and their family members, and the limitation of movements within the camp. The second evaluated the impact of preventive pharmacological interventions such as the use of hydroxychloroquine, ivermectin, povidone-iodine, zinc, and vitamin C, in different dosages and combinations, to a group of immigrant workers in a city dormitory in Singapore. The third study evaluated an intervention to increase vaccination coverage within a Latino immigrant community in the United States, moving the location of vaccine supply throughout the most frequented contexts by the immigrant community to access the city services. The results of the first and second studies suggest impacts for some of the proposed interventions even if they have been partially overcome due to the use of mass vaccination. The third showed a reduction in vaccine hesitancy and an increase in vaccination uptake and a snowball effect. CONCLUSIONS: the systematic review identified few heterogeneous studies, preventing any generalization of the results. Probably, the low scientific production does not reflect the successful experiences implemented. In the case of a possible resumption of the epidemic or new emergencies, it will be necessary to rely on indirect evidence and the scientific community should consider more the responsibility to evaluate and make available the experiences gained in the field. A constant monitoring activity of the evidence that will be necessary to updating the results for suggest consolidated prevention measures to for controlling the incidence of COVID-19 in immigrants during a possible resumption of the epidemic and for application in other similarly emergency contexts.
Refugees and migrants remain one of the most vulnerable people and the COVID-19 pandemic has posed additional challenges both in terms of increased risk of infection and death experienced, highlighting existing inequitie...Refugees and migrants remain one of the most vulnerable people and the COVID-19 pandemic has posed additional challenges both in terms of increased risk of infection and death experienced, highlighting existing inequities in access to and utilization of health services, as underlined by World Health Organization in 2020 in the Health and Migration Programme. In the context of the Programme 'Epidemiological surveillance and control of COVID-19 in metropolitan urban areas and for the containment of the circulation of SARS-CoV-2 in the migrant population in Italy', coordinated by the Italian Centre for Disease Control and Prevention (CCM) and funded by the Italian Ministry of Health, an experimental epidemiological, virological, and molecular SARS-CoV-2 surveillance system addressed to migrant populations in Sicily through Mediterranean routes was implemented. To this end, a multidisciplinary network supported by a hub&spoke system of laboratories was established in Sicily Region (Southern Italy), using molecular and Next Generation Sequencing (NGS) techniques to identify different SARS-CoV-2 strains in relation to migration flows. Herein, the lesson learnt through this integrated surveillance model, that was in place from February 2021 till the end of the COVID-19 emergency in Italy, are reported. Overall, the data emphasized the need for enhancing molecular surveillance in the areas of the globe where testing and sequencing resources are limited. The epidemiological, virological, and molecular SARS-CoV-2 monitoring, targeted to the migrant population, may also provide a valuable experimental model.
BACKGROUND: the COVID-19 pandemic had important effects on people's health and socioeconomic conditions. Health surveillance systems fail to provide an adequate epidemiological profile of the pandemic in the recently imm...BACKGROUND: the COVID-19 pandemic had important effects on people's health and socioeconomic conditions. Health surveillance systems fail to provide an adequate epidemiological profile of the pandemic in the recently immigrated population. In Piedmont and Emilia-Romagna Region (Northern Italy), a study was conducted in the public and private structures dedicated to the reception of migrants,Objectives: to evaluate the impact of the epidemic on the migrant population assisted in local reception centres. DESIGN: quantitative analysis based on data collected in reception centres; qualitative analysis which, through 10 focus groups and 35 interviews with operators and migrants, investigated the consequences of the pandemic, their mechanisms, and their explanations. SETTING AND PARTICIPANTS: users and operators of reception services for migrants in the cities of Turin (Piedmont) and Bologna (Emilia-Romagna). MAIN OUTCOMES MEASURES: quantitative analysis: access to services, prevalence of diseases, prevalence of test positivity; qualitative analysis: spread of the virus, organization of services, perceived critical issues and needs, solutions adopted, information received, perceived impact on health, perceived impact on social determinants. RESULTS: a varied picture emerges. The few data available do not show a greater incidence and severity of the virus compared to the Italian population, despite strong elements of risk linked to precarious living and working conditions being reported. Reception services have implemented more flexible organizational methods, with effective prevention measures. The interruption of care pathways has led to the flare-up of previous pathologies, but getting in touch with services for the pandemic control has also allowed diagnosis and management of unknown diseases. Uncertainty, fear, social withdrawal, and crisis of the migratory project have increased mental disorders. CONCLUSIONS: in this scenario, close collaboration between public and third sector structures has proved fundamental and must be strengthened to overcome access barriers and make services more inclusive and equitable. It is also necessary to develop information systems capable of monitoring the health needs of this 'invisible' population.
Caranci N, Adorno V, Bartolini L
… +14 more, Corsaro A, Spadea T, Rusciani R, Di Girolamo C, Cacciani L, Agabiti N, Profili F, Milli C, Silvestri C, Cernigliaro A, Ventura M, Di Napoli A, Petrelli A, Giorgi Rossi P
BACKGROUND: according to the literature, socially disadvantaged strata of the population, including immigrants, have been more vulnerable to the risk of SARS-CoV-2 infection due to greater exposure and less opportunity t...BACKGROUND: according to the literature, socially disadvantaged strata of the population, including immigrants, have been more vulnerable to the risk of SARS-CoV-2 infection due to greater exposure and less opportunity to protect themselves, and to COVID-19 complications due to metabolic and clinical risk factors as well as to healthcare access barriers. Two Italian projects - coordinated by the Italian National Institute for Health, Migration and Poverty and the Italian National Centre for Disease Prevention and Control - set up an epidemiological surveillance to monitor the temporal trends of the SARS-CoV-2 pandemic in five Italian regions using validated indicators. OBJECTIVES: to identify differences between Italians and immigrants in terms of the epidemic evolution and its health consequences, and to investigate possible differences by urbanisation degree and region of residence. DESIGN: cross sectional study. SETTING AND PARTICIPANTS: resident population in five Italian regions: Piedmont, Emilia-Romagna, Tuscany, Lazio, and Sicily. MAIN OUTCOMES MEASURES: frequencies of positive tests, routine hospitalisations, and deaths related to COVID-19 were collected, with respect to the period between 22.02.2020 and 31.01.2021. Data were aggregated by week, region, degree of urbanisation, gender, age (5-year classes), and citizenship (Italian/foreigner). Crude and standardised rates of the outcomes considered were calculated, stratified by gender, citizenship, region, and aggregated by pandemic macro-period. RESULTS: the study population counts approximately about 23 million residents as of 01.01.2020 (9.4% immigrants). During the period of interest, 1,542,458 cases of infection were recorded, whereas hospitalisations amounted to 175,979, and deaths to 44,867. Lower crude rates of hospitalisations and deaths were observed among immigrants compared to Italians. The age-standardised hospitalisation rates, on the other hand, showed an opposite trend and were significantly higher among immigrants, due to the excess observed in urban areas, especially in periods of epidemic peak, both for males (weekly mean standardised rate: 34.6 per 1,000 of foreign residents vs 24.3 of Italians over the period October 2020-January 2021) and females (23.2 vs 15.1 over the period February-April 2021). These differences seem to be more pronounced in the central regions and tend to disappear for residents in scarcely populated areas. Standardised mortality rates were higher among immigrants, both men and women, from October 2020 and more markedly in February-April 2021 among men. CONCLUSIONS: the impact of COVID-19 was stronger among immigrants in relation to hospitalisation, especially during epidemic peak periods and in some regions. The difference in the impact on mortality was smaller. There is some heterogeneity among regions and urban areas that is worth considering in the planning of interventions and integration policies.
Ventura M, Di Napoli A, Caranci N
… +15 more, Adorno V, Bartolini L, Corsaro A, Spadea T, Rusciani R, Di Girolamo C, Cacciani L, Agabiti N, Profili F, Milli C, Silvestri C, Cernigliaro A, Giorgi Rossi P, D'Amato S, Petrelli A
OBJECTIVES: to describe indicators, data sources, and levels of geographical stratification used within the framework of the CCM project "Epidemiological Surveillance and Control of COVID-19 in Metropolitan Urban Areas a...OBJECTIVES: to describe indicators, data sources, and levels of geographical stratification used within the framework of the CCM project "Epidemiological Surveillance and Control of COVID-19 in Metropolitan Urban Areas and for the containment of SARS-CoV-2 circulation in the immigrant population in Italy". DESIGN: population-based observational study based on data from the Integrated Covid-19 Surveillance System and the archive of hospital discharge records. SETTING AND PARTICIPANTS: interregional collaborative project. Resident population in 5 Italian Regions (Piedmont, Emilia-Romagna, Tuscany, Lazio, and Sicily). MAIN OUTCOMES MEASURES: crude and age-standardized rates of diagnostic test utilization and positivity, hospitalization (in any department and in intensive care unit), and mortality in COVID-19 cases. RESULTS: starting from the set of 11 indicators from the Italian National Institute for Health, Migration and Poverty (INMP) project "Epidemiology of SARS-CoV-2 Infection (COVID-19) and Use of Health Services in the Immigrant Population and Vulnerable Population Groups in Italy", the five most effective indicators for CCM purposes were identified. The INMP project highlighted higher rates of test access and positivity among Italians compared to foreigners, higher standardized hospitalization rates among foreigners, and higher standardized mortality rates among Italians, with geographical and temporal heterogeneity. The intersection between the DEGURBA (degree of urbanisation) classification and altimetric zones defined five levels of territorial stratification characterized by decreasing population density. Approximately 81% of the population involved in the CCM project resided in the first two levels; 43% of Italians lived in areas with intermediate population density in hilly or plain areas, while 48% of foreigners were concentrated in densely populated areas. CONCLUSIONS: sharing the collaborative approach and a research methodology already tested, integrated with the analysis of disaggregated indicators by morphological, functional, and administrative characteristics of the residential territory, allowed for assessing differences in the impact of the pandemic between Italians and foreigners residing in more or less densely populated areas.
Within the prevention programmes of the Italian Ministry of Health, a project aimed to containing the circulation of SARS-CoV-2 virus in the immigrant population in Italy has entrusted to the Regional Health Authority of...Within the prevention programmes of the Italian Ministry of Health, a project aimed to containing the circulation of SARS-CoV-2 virus in the immigrant population in Italy has entrusted to the Regional Health Authority of Sicily Region (Southern Italy). New evidence has been promoted to disseminate and share public health intervention models. The project involved public health institutions across the national territory and was carried out during the COVID-19pandemic. The project reached the general aim through specific objectives, identifying information sources and health indicators, evaluating the impact of COVID-19, and promoting intervention programmes for taking charge immigrant population. Social distancing, although necessary, has further amplified the gap of inequalities in health, confirming major vulnerability for infection. Having filled some knowledge gaps and proposed prevention tools has been useful for the containment of the virus, for a possible resurgence of the phenomenon, for application in other emergency contexts, and for recalibration in new epidemic events.
This intervention explores the intricate relationship among sex, gender, migratory status, and health outcomes in migrant populations. It emphasizes the distinction between sex (biological characteristics) and gender (so...This intervention explores the intricate relationship among sex, gender, migratory status, and health outcomes in migrant populations. It emphasizes the distinction between sex (biological characteristics) and gender (socially constructed roles), highlighting how they intersect throughout the migration journey. The impact of gender dynamics on migration decisions, experiences, and outcomes is examined, with specific attention to sex/gender differences in the health and lifestyles of immigrant populations. Furthermore, it underscores how sex and gender disparities may affect access to healthcare. The importance of sex- and gender-inclusive healthcare services and cultural sensitivity in addressing these disparities is emphasized. Additionally, the intervention calls for research that considers diverse gender identities and country-specific factors. Ultimately, it asserts the need for sex- and gender-sensitive policies, collaborative efforts, and tailored interventions to promote health equity, gender equality, and human rights in migrant populations, aligning with global policy goals.
The foreign population accounts for 8.6 percent (about 5 million) of the total number of residents, so it is necessary to monitor their health status. Foreigners have standardized mortality rates of about half that of It...The foreign population accounts for 8.6 percent (about 5 million) of the total number of residents, so it is necessary to monitor their health status. Foreigners have standardized mortality rates of about half that of Italians. In terms of hospitalization, rates and causes of hospitalization differ substantially due to the younger average age of foreigners. In particular, a much higher burden of hospitalizations in obstetrical care is observed among foreign women. Maternal and child health is a major concern for foreigners, especially for pregnancy care, which is also reflected in worse health outcomes for newborns.Difficulties in accessing and using basic and specialized territorial services are confirmed by the higher proportion of ordinary emergency hospitalizations among foreigners, the higher risk of being hospitalized for causes that could be treated in an outpatient setting, and the higher frequency of access to emergency rooms with a white/green triage code.The pandemic exacerbated health inequalities because it affected the most disadvantaged social strata of the population, including immigrants, more severely in terms of infection and outcomes.Immigrants could become the least healthy part of the population, similar to what is observed in countries with a longer tradition of migration, even in a country like Italy, where access to care is universally guaranteed.
The study of health of migrant and immigrant populations is of particular interest and actual in recent years, and there is a lack of research assessing aspects of aging of permanently resident immigrants, chronic non-co...The study of health of migrant and immigrant populations is of particular interest and actual in recent years, and there is a lack of research assessing aspects of aging of permanently resident immigrants, chronic non-communicable diseases, multimorbidity, and study of second generations. This contribution proposes to describe the relationship between health and immigration and their association with frailty through the anthropological concept of syndemics. Syndemics represents a set of closely interconnected and mutually enhancing health problems, significantly influencing the overall health status of a population. This occurs within the context of a perpetual pattern of harmful social conditions. Among the syndemics described in the literature, the most interesting in this area is the one concerning the increased frailty due to the interaction among diabetes, depression, immigration, and social distress, called VIDDA (Violence, Immigration, Depression, Diabetes, and Abuse), first identified in Mexican immigrant women in the United States. The main limitation of using the syndemic approach to study the health of immigrant populations is the difficulty in moving from the anthropological, primarily qualitative approach to the epidemiological-quantitative approach. Despite this, the epidemiological study of immigrant populations could benefit from the syndemic approach, because it can better describe complex causal relationships and provide evidence for modification of the clinical approach.
The relationship between inequalities and health has been widely studied. Several theories have been proposed to define the role of the factors that act on the health levels, their strength and the determination profile....The relationship between inequalities and health has been widely studied. Several theories have been proposed to define the role of the factors that act on the health levels, their strength and the determination profile. This review recalls the main theories and interpretation proposed by different fields of knowledge and highlights that there is not a single way to generate inequalities in health. Deprivation, disadvantage drift, empowerment, structure and social capital, status syndrome, and embodiment are some of the concepts recalled and explored. Some theories consolidate each other, and some remain more isolated. To increase the knowledge on the mechanisms to define the disease distributions among individuals in the population can help to define new and greater equity intervention policies.
Ponzio M, Battaglia MA, Trojano M
… +9 more, Salivetto M, D'Ettorre A, Corrado D, Paletta P, Lepore V, Mosconi P, Comitato Scientifico del Registro Italiano Sclerosi Multipla e Patologie Correlate, Rete dei centri del Registro Italiano Sclerosi Multipla e Patologie Correlate, Rete degli assistenti di ricerca del Registro Italiano Sclerosi Multipla e Patologie Correlate
Registers collecting data from clinical practice (real world data) have gained increasing interest in recent years in the scientific, administrative, and regulatory fields. The value of longitudinal data collection in de...Registers collecting data from clinical practice (real world data) have gained increasing interest in recent years in the scientific, administrative, and regulatory fields. The value of longitudinal data collection in deepening knowledge about a specific pathology and its healthcare complexity is increasingly recognized. This article describes the development, organizational structure, and technical characteristics of the Italian Multiple Sclerosis and Related Disorders Register (RISM). This multicentre and prospective study gathers demographic, clinical, and epidemiological data from the Italian population with multiple sclerosis and related diseases. The study, officially launched in 2015, but containing data collected since the 1990's, currently involves the active participation of 136 specialized clinical centres and more than 80,000 enrolled patients. The analysis of data in RISM allows for a detailed description of the characteristics of multiple sclerosis and related diseases, providing new insights useful for healthcare planning, cost evaluation, treatment efficacy and safety assessment, and scientific research studies. The main demographic and clinical data of enrolled patients are reported, with a focus on specific study cohorts. In a continuous effort to improve data quality, RISM has implemented specific quality indicators. Starting from the RISM experience, crucial aspects such as the institutional recognition of the disease register, the contribution that register can provide in pharmacovigilance studies, the organizational and management challenges, and privacy issues are discussed.