Simone Ticciati - Academia.edu (original) (raw)
Books by Simone Ticciati
I mondi di Zeno. La coscienza di Svevo un secolo dopo, 2024
The essay focuses on the presence of epistolary fiction in Svevo's narrative, exploring its funct... more The essay focuses on the presence of epistolary fiction in Svevo's narrative, exploring its function within Una vita, Senilità, La coscienza di Zeno and «Continuazioni», where letters are used from time to time as propulsive elements for the plot, failed and unreliable instruments of communication, narrative operators that connect internal readers with the external reader. The aim of the article is to compare Svevo' s epistolary vocation with the monologuing attitude of his characters.
Leggibilità e comprensibilità, un dovere della comunicazione istituzionale Tema 1 STUDIARE ORGANI... more Leggibilità e comprensibilità, un dovere della comunicazione istituzionale Tema 1 STUDIARE ORGANISMI VIVENTI La metodologia di raccolta e analisi dei dati Cap. 1 2 semplice brevi comprensibili Cerco una lingua semplice. Perché voglio capire tutto quello che c'è scritto. Cerco testi costruiti con frasi brevi. Perché sono più facili e le afferro subito. Cerco parole comprensibili. Vanno bene anche quelle più difficili, quelle delle malattie o degli esami da fare: ma spiegatemele, per cortesia. 2 COMUNICARE SANITÀ
Papers by Simone Ticciati
Orphanet Journal of Rare Diseases
Background Behçet Syndrome (BS) has a significant psychological and social impact on patients, ca... more Background Behçet Syndrome (BS) has a significant psychological and social impact on patients, caregivers and families. The present study aims at exploring disease perception in BS patients, using both a co-designed survey and the narrative medicine (NM) approach. Methods An ad-hoc questionnaire was co-designed by clinicians expert in BS, BS patients and caregivers and BS adult patients were invited to answer the online questionnaires. Cluster analysis was used to analyse data from the survey and to identify groups of patients with diverse disease perception. To further explore real-life perspectives, the stories of illness of a smaller group of adult BS patients were anonymously collected online and analysed by means of text, sentiment and qualitative analysis. Results Two hundred and seven patients answered the survey and forty-three stories were collected. The cluster analysis highlighted that accepting or not the disease has a strong impact on the daily life, on how BS patients ...
Critica letteraria, Sep 2023
This article focuses on the presence of epistolary fiction in Svevo's narrative, exploring its fu... more This article focuses on the presence of epistolary fiction in Svevo's narrative, exploring its function within Una vita, Senilità, La coscienza di Zeno and «Continuazioni», where letters are used from time to time as propulsive elements for the plot, failed and unreliable instruments of communication, narrative operators that connect internal readers with the external reader. The aim of the article is to compare Svevo' s epistolary vocation with the monologuing attitude of his characters.
Nuova Rivista di Letteratura Italiana, 2021
This study presents the edition of five unpublished documents sent by Italo Svevo to James Joyce:... more This study presents the edition of five unpublished documents sent by
Italo Svevo to James Joyce: three letters, a postcard and a note of recommendation. The study also restores the original reading of a previously edited letter by Svevo to Joyce, and provides the necessary information to understand the content and the context of the documents. The result is not only an enrichment of Svevo’s correspondence, but also a further definition of the quality of Svevo-Joyce relationship between 1909 and 1912.
"Diacritica", VII, 39 - 31 luglio , 2021
This study presents the edition of the correspondence between Italo Svevo and Ario Tribel and bet... more This study presents the edition of the correspondence between Italo Svevo and Ario Tribel and
between Italo Svevo and Marino Szombathely. In addition to the publication of unpublished documents,
recently offered to the Museo Sveviano, the study also presents the already published documents, providing
the essential elements in order to understand their content and context, and to establish the framework of the
relationships between Svevo and these Triestin intellectuals.
1. PIER PAOLO PASOLINI, Dieci libri di poesia da Carducci a Franco Cavallo, «Tempo», 5 aprile 197... more 1. PIER PAOLO PASOLINI, Dieci libri di poesia da Carducci a Franco Cavallo, «Tempo», 5 aprile 1974, poi col titolo [Alcuni poeti] in Descrizioni di descrizioni, a c. di GRAZIELLA CHIARCOSSI, Torino, Einaudi, 1979, p. 295, ora in Saggi sulla letteratura e sull'arte, a c. di WALTER SITI e SILVIA DE LAUDE, Milano, Mondadori 1999, pp. 2028-9. 2. LUIGI BALDACCI, Giosue Carducci: strategia e invenzione, in Ottocento come noi. Saggi e pretesti italiani, Milano, Rizzoli 2003, pp. 108-37 (per l'elenco delle successive redazioni del saggio si veda ivi, p. 407). 3. Ivi, p. 108. 4. E del resto lo stesso Pasolini premette alle recensioni la seguente giustificazione: "Un cambiamento del ritmo tipografico di questa rivista mi costringe a «consegnare il pezzo» tre giorni prima del solito. Devo scriverlo in due ore. Il lettore e gli autori mi scusino la sproporzione tra il testo e il resoconto", PA-SOLINI, [Alcuni poeti], p. 2028. SIMONE TICCIATI I MARMI DELLA METASTORIA PRESENZA DI CARDUCCI IN PASOLINI
RMD Open, 2022
Objective The aim of this work is to explore patient’ unmet needs of rare and complex rheumatic t... more Objective The aim of this work is to explore patient’ unmet needs of rare and complex rheumatic tissue diseases (rCTDs) patients during pregnancy and its planning by means of the narrative-based medicine (NBM) approach. Methods A panel of nine rCTDs patients’ representatives was identified to codesign a survey aimed at collecting the stories of rCTD patients who had one or more pregnancies/ miscarriages. The results of the survey and the stories collected were analysed and discussed with a panel of patients’ representatives to identify unmet needs, challenges and possible strategies to improve the care of rCTD patients. Results 129 replies were collected, and 112 stories were analysed. Several unmet needs in the management of pregnancy in rCTDs were identified, such as fragmentation of care among different centres, lack of education and awareness on rCTD pregnancies among midwifes, obstetricians and gynaecologists. The lack of receiving appropriate information and education on rCTDs pregnancy was also highlighted by patients and their families. The need for a holistic approach and the availability specialised pregnancy clinics with a multidisciplinary organisation as well as the provision of psychological support during all the phases around pregnancy was considered also a priority. Conclusion The adoption of the NBM approach enabled a direct identification of unmet needs, and a list of possible actions was elaborated to improve the care of rCTD patients and their families in future initiatives.
Frontiers in Medicine, 2022
Background Patient registries play a crucial role in supporting clinical practice, healthcare pla... more Background Patient registries play a crucial role in supporting clinical practice, healthcare planning and medical research, offering a real-world picture on rare and complex connective tissue diseases (rCTDs). ERN ReCONNET launched the first European Registry Infrastructure with the aim to plan, upgrade and link registries for rCTDs, with the final goal to promote a harmonized data collection approach all over Europe for rCTDs.
Methods An online survey addressed to healthcare professionals and patients' representatives active in the field of rCTDs was integrated by an extensive database search in order to build a mapping of existing registries for rCTDs.
Findings A total of 140 registries were found, 38 of which include multiple diseases. No disease-specific registry was identified for relapsing polychondritis, mixed connective tissue disease and undifferentiated connective tissue disease.
Discussion This overview on the existing registries for rCTDs provides a useful starting point t...
Clinical and Experimental Rheumatology, 2022
In order to address the main challenges related to the rare diseases (RDs) the European Commissio... more In order to address the main challenges related to the rare diseases (RDs) the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across Europe. The mission of the ERNs is to tackle low prevalence and RDs that require highly specialised treatment and a concentration of knowledge and resources. In fact, ERNs offer the potential to give patients and healthcare professionals across the EU access to the best expertise and timely exchange of lifesaving knowledge, trying to make the knowledge travelling more than patients. For this reason, ERNs were established as concrete European infrastructures, and this is particularly crucial in the framework of rare and complex diseases in which no country alone has the whole knowledge and capacity to treat all types of patients.It has been five years since their kick-off launch in Vilnius in 2017. The 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients' care pathways and many other fundamental topics. The present work is therefore aimed not only at reporting a summary of the main activities and milestones reached so far, but also at celebrating the first 5 years of the ERN on Rare and Complex Connective Tissue and Musculo-skeletal Diseases (ReCONNET), in which the members of the network built together one of the 24 infrastructures that are hopefully going to change the scenario of rare diseases across the EU.
Frontiers in Health Services, 2022
As a matter of fact, organisation always matters when discussing about healthcare, since it is fu... more As a matter of fact, organisation always matters when discussing about healthcare, since it is fundamental in order to ensure the delivery of the most appropriate care to patients in the most appropriate way. Unfortunately, the pandemic brought by the severe acute respiratory syndrome-coronavirus 2 (SARS-CoV-2) imposed a huge reorganisation of the healthcare systems, with several repercussions on the care of several chronic conditions, that were in many cases discontinued. This was the case of rare diseases (RDs), conditions that even under normal circumstances can experience diagnostic delays and difficulties in receiving appropriate care. The context of the European Reference Networks (ERNs) represents one of the most appropriate settings for the creation of organisational reference models for patient care pathways (PCP). As a matter of fact, the main mission of ERNs is to improve the care of patients with RDs in Europe through a patient-centred approach, thanks to real multistakeholder involvement. For this reason, in the last years, an extensive effort has been made towards the creation of a methodological approach aimed at providing organisational reference models for PCP in RDs across the different Member States. In fact, in order to develop the reference model, a structured methodology was created to enable the design of the PCP based on a deep sharing of expertise on high-quality care and characterised by a strong patient-centred approach: RarERN PathTM. Among the different stakeholders that need to be involved in planning strategic actions to ensure care also during an emergency, patients’ representatives, healthcare professionals, hospital managers, and experts in healthcare organisations play a crucial role.
Orphanet Journal of Rare Diseases, 2021
Background As often seen in many chronic diseases, the disease impact on patients also induces a... more Background
As often seen in many chronic diseases, the disease impact on patients also induces a significant impact on the quality of life (QoL) of caregivers. Caregivers are the ones who are really willing to offer care in the general approach of many aspects of the disease, including the awareness of the diseases itself, the daily management of therapy, and all the potential challenges that living with a chronic disease can include. The main objectives of the study were to explore the perspectives and views of caregivers of Behçet’s syndrome (BS) patients, to study their level of awareness on the disease and the impact that BS may have on their lives by means of a survey co-designed with caregivers and patients with this purpose. A survey was entirely co-designed with a panel of caregivers of patients living with BS patients.
Results
Results show that BS caregivers organise their life according to the needs of the patient, that they (79%) considered themselves as helpful for the patient and 53% of them replied that they can freely express their emotions. Notably, 70% and 68% of the respondents reported they renounced with a variable frequency to sexual relationships due to concerns regarding the health of the partner or to the partner's illness, respectively. The majority (79%) of respondents indicated that they are familiar with the treatment taken by the patients and that 68% deal with the administration of some medicines. In terms of awareness, a good percentage (64%) of respondents reported to understand the illness and, in terms of education, 68% of participants are willing to take part in training programmes dedicated to BS.
Conclusions
The results of this survey contribute to provide new information on BS caregivers and on their important role, and to identify areas in which new initiatives could provide BS caregivers (and therefore patients) with tools and knowledge that can empower them in reducing the burden of the disease on their lives, on families, and on the patient.
I mondi di Zeno. La coscienza di Svevo un secolo dopo, 2024
The essay focuses on the presence of epistolary fiction in Svevo's narrative, exploring its funct... more The essay focuses on the presence of epistolary fiction in Svevo's narrative, exploring its function within Una vita, Senilità, La coscienza di Zeno and «Continuazioni», where letters are used from time to time as propulsive elements for the plot, failed and unreliable instruments of communication, narrative operators that connect internal readers with the external reader. The aim of the article is to compare Svevo' s epistolary vocation with the monologuing attitude of his characters.
Leggibilità e comprensibilità, un dovere della comunicazione istituzionale Tema 1 STUDIARE ORGANI... more Leggibilità e comprensibilità, un dovere della comunicazione istituzionale Tema 1 STUDIARE ORGANISMI VIVENTI La metodologia di raccolta e analisi dei dati Cap. 1 2 semplice brevi comprensibili Cerco una lingua semplice. Perché voglio capire tutto quello che c'è scritto. Cerco testi costruiti con frasi brevi. Perché sono più facili e le afferro subito. Cerco parole comprensibili. Vanno bene anche quelle più difficili, quelle delle malattie o degli esami da fare: ma spiegatemele, per cortesia. 2 COMUNICARE SANITÀ
Orphanet Journal of Rare Diseases
Background Behçet Syndrome (BS) has a significant psychological and social impact on patients, ca... more Background Behçet Syndrome (BS) has a significant psychological and social impact on patients, caregivers and families. The present study aims at exploring disease perception in BS patients, using both a co-designed survey and the narrative medicine (NM) approach. Methods An ad-hoc questionnaire was co-designed by clinicians expert in BS, BS patients and caregivers and BS adult patients were invited to answer the online questionnaires. Cluster analysis was used to analyse data from the survey and to identify groups of patients with diverse disease perception. To further explore real-life perspectives, the stories of illness of a smaller group of adult BS patients were anonymously collected online and analysed by means of text, sentiment and qualitative analysis. Results Two hundred and seven patients answered the survey and forty-three stories were collected. The cluster analysis highlighted that accepting or not the disease has a strong impact on the daily life, on how BS patients ...
Critica letteraria, Sep 2023
This article focuses on the presence of epistolary fiction in Svevo's narrative, exploring its fu... more This article focuses on the presence of epistolary fiction in Svevo's narrative, exploring its function within Una vita, Senilità, La coscienza di Zeno and «Continuazioni», where letters are used from time to time as propulsive elements for the plot, failed and unreliable instruments of communication, narrative operators that connect internal readers with the external reader. The aim of the article is to compare Svevo' s epistolary vocation with the monologuing attitude of his characters.
Nuova Rivista di Letteratura Italiana, 2021
This study presents the edition of five unpublished documents sent by Italo Svevo to James Joyce:... more This study presents the edition of five unpublished documents sent by
Italo Svevo to James Joyce: three letters, a postcard and a note of recommendation. The study also restores the original reading of a previously edited letter by Svevo to Joyce, and provides the necessary information to understand the content and the context of the documents. The result is not only an enrichment of Svevo’s correspondence, but also a further definition of the quality of Svevo-Joyce relationship between 1909 and 1912.
"Diacritica", VII, 39 - 31 luglio , 2021
This study presents the edition of the correspondence between Italo Svevo and Ario Tribel and bet... more This study presents the edition of the correspondence between Italo Svevo and Ario Tribel and
between Italo Svevo and Marino Szombathely. In addition to the publication of unpublished documents,
recently offered to the Museo Sveviano, the study also presents the already published documents, providing
the essential elements in order to understand their content and context, and to establish the framework of the
relationships between Svevo and these Triestin intellectuals.
1. PIER PAOLO PASOLINI, Dieci libri di poesia da Carducci a Franco Cavallo, «Tempo», 5 aprile 197... more 1. PIER PAOLO PASOLINI, Dieci libri di poesia da Carducci a Franco Cavallo, «Tempo», 5 aprile 1974, poi col titolo [Alcuni poeti] in Descrizioni di descrizioni, a c. di GRAZIELLA CHIARCOSSI, Torino, Einaudi, 1979, p. 295, ora in Saggi sulla letteratura e sull'arte, a c. di WALTER SITI e SILVIA DE LAUDE, Milano, Mondadori 1999, pp. 2028-9. 2. LUIGI BALDACCI, Giosue Carducci: strategia e invenzione, in Ottocento come noi. Saggi e pretesti italiani, Milano, Rizzoli 2003, pp. 108-37 (per l'elenco delle successive redazioni del saggio si veda ivi, p. 407). 3. Ivi, p. 108. 4. E del resto lo stesso Pasolini premette alle recensioni la seguente giustificazione: "Un cambiamento del ritmo tipografico di questa rivista mi costringe a «consegnare il pezzo» tre giorni prima del solito. Devo scriverlo in due ore. Il lettore e gli autori mi scusino la sproporzione tra il testo e il resoconto", PA-SOLINI, [Alcuni poeti], p. 2028. SIMONE TICCIATI I MARMI DELLA METASTORIA PRESENZA DI CARDUCCI IN PASOLINI
RMD Open, 2022
Objective The aim of this work is to explore patient’ unmet needs of rare and complex rheumatic t... more Objective The aim of this work is to explore patient’ unmet needs of rare and complex rheumatic tissue diseases (rCTDs) patients during pregnancy and its planning by means of the narrative-based medicine (NBM) approach. Methods A panel of nine rCTDs patients’ representatives was identified to codesign a survey aimed at collecting the stories of rCTD patients who had one or more pregnancies/ miscarriages. The results of the survey and the stories collected were analysed and discussed with a panel of patients’ representatives to identify unmet needs, challenges and possible strategies to improve the care of rCTD patients. Results 129 replies were collected, and 112 stories were analysed. Several unmet needs in the management of pregnancy in rCTDs were identified, such as fragmentation of care among different centres, lack of education and awareness on rCTD pregnancies among midwifes, obstetricians and gynaecologists. The lack of receiving appropriate information and education on rCTDs pregnancy was also highlighted by patients and their families. The need for a holistic approach and the availability specialised pregnancy clinics with a multidisciplinary organisation as well as the provision of psychological support during all the phases around pregnancy was considered also a priority. Conclusion The adoption of the NBM approach enabled a direct identification of unmet needs, and a list of possible actions was elaborated to improve the care of rCTD patients and their families in future initiatives.
Frontiers in Medicine, 2022
Background Patient registries play a crucial role in supporting clinical practice, healthcare pla... more Background Patient registries play a crucial role in supporting clinical practice, healthcare planning and medical research, offering a real-world picture on rare and complex connective tissue diseases (rCTDs). ERN ReCONNET launched the first European Registry Infrastructure with the aim to plan, upgrade and link registries for rCTDs, with the final goal to promote a harmonized data collection approach all over Europe for rCTDs.
Methods An online survey addressed to healthcare professionals and patients' representatives active in the field of rCTDs was integrated by an extensive database search in order to build a mapping of existing registries for rCTDs.
Findings A total of 140 registries were found, 38 of which include multiple diseases. No disease-specific registry was identified for relapsing polychondritis, mixed connective tissue disease and undifferentiated connective tissue disease.
Discussion This overview on the existing registries for rCTDs provides a useful starting point t...
Clinical and Experimental Rheumatology, 2022
In order to address the main challenges related to the rare diseases (RDs) the European Commissio... more In order to address the main challenges related to the rare diseases (RDs) the European Commission launched the European Reference Networks (ERNs), virtual networks involving healthcare providers (HCPs) across Europe. The mission of the ERNs is to tackle low prevalence and RDs that require highly specialised treatment and a concentration of knowledge and resources. In fact, ERNs offer the potential to give patients and healthcare professionals across the EU access to the best expertise and timely exchange of lifesaving knowledge, trying to make the knowledge travelling more than patients. For this reason, ERNs were established as concrete European infrastructures, and this is particularly crucial in the framework of rare and complex diseases in which no country alone has the whole knowledge and capacity to treat all types of patients.It has been five years since their kick-off launch in Vilnius in 2017. The 24 ERNs have been intensively working on different transversal areas, including patient management, education, clinical practice guidelines, patients' care pathways and many other fundamental topics. The present work is therefore aimed not only at reporting a summary of the main activities and milestones reached so far, but also at celebrating the first 5 years of the ERN on Rare and Complex Connective Tissue and Musculo-skeletal Diseases (ReCONNET), in which the members of the network built together one of the 24 infrastructures that are hopefully going to change the scenario of rare diseases across the EU.
Frontiers in Health Services, 2022
As a matter of fact, organisation always matters when discussing about healthcare, since it is fu... more As a matter of fact, organisation always matters when discussing about healthcare, since it is fundamental in order to ensure the delivery of the most appropriate care to patients in the most appropriate way. Unfortunately, the pandemic brought by the severe acute respiratory syndrome-coronavirus 2 (SARS-CoV-2) imposed a huge reorganisation of the healthcare systems, with several repercussions on the care of several chronic conditions, that were in many cases discontinued. This was the case of rare diseases (RDs), conditions that even under normal circumstances can experience diagnostic delays and difficulties in receiving appropriate care. The context of the European Reference Networks (ERNs) represents one of the most appropriate settings for the creation of organisational reference models for patient care pathways (PCP). As a matter of fact, the main mission of ERNs is to improve the care of patients with RDs in Europe through a patient-centred approach, thanks to real multistakeholder involvement. For this reason, in the last years, an extensive effort has been made towards the creation of a methodological approach aimed at providing organisational reference models for PCP in RDs across the different Member States. In fact, in order to develop the reference model, a structured methodology was created to enable the design of the PCP based on a deep sharing of expertise on high-quality care and characterised by a strong patient-centred approach: RarERN PathTM. Among the different stakeholders that need to be involved in planning strategic actions to ensure care also during an emergency, patients’ representatives, healthcare professionals, hospital managers, and experts in healthcare organisations play a crucial role.
Orphanet Journal of Rare Diseases, 2021
Background As often seen in many chronic diseases, the disease impact on patients also induces a... more Background
As often seen in many chronic diseases, the disease impact on patients also induces a significant impact on the quality of life (QoL) of caregivers. Caregivers are the ones who are really willing to offer care in the general approach of many aspects of the disease, including the awareness of the diseases itself, the daily management of therapy, and all the potential challenges that living with a chronic disease can include. The main objectives of the study were to explore the perspectives and views of caregivers of Behçet’s syndrome (BS) patients, to study their level of awareness on the disease and the impact that BS may have on their lives by means of a survey co-designed with caregivers and patients with this purpose. A survey was entirely co-designed with a panel of caregivers of patients living with BS patients.
Results
Results show that BS caregivers organise their life according to the needs of the patient, that they (79%) considered themselves as helpful for the patient and 53% of them replied that they can freely express their emotions. Notably, 70% and 68% of the respondents reported they renounced with a variable frequency to sexual relationships due to concerns regarding the health of the partner or to the partner's illness, respectively. The majority (79%) of respondents indicated that they are familiar with the treatment taken by the patients and that 68% deal with the administration of some medicines. In terms of awareness, a good percentage (64%) of respondents reported to understand the illness and, in terms of education, 68% of participants are willing to take part in training programmes dedicated to BS.
Conclusions
The results of this survey contribute to provide new information on BS caregivers and on their important role, and to identify areas in which new initiatives could provide BS caregivers (and therefore patients) with tools and knowledge that can empower them in reducing the burden of the disease on their lives, on families, and on the patient.
Orphanet Journal of Rare Diseases, 2020
Background In 2017, the European Commission has launched the European Reference Networks (ERNs), ... more Background In 2017, the European Commission has launched the European Reference Networks (ERNs), virtual networks involving healthcare providers across Europe. The aim of the ERNs is to tackle complex and rare diseases and conditions that require highly specialized treatment and a concentration of knowledge and resources. The ERN on rare and complex connective tissue and musculoskeletal diseases (ERN ReCONNET) is one of the 24 ERNs approved that aims to improve the management of Rare and Complex Connective Tissue and Musculoskeletal Diseases. Objective The RarERN Path methodology aims to create a single reference organisational model for patients’ care pathways which, if applied in different contexts, helps to ensure an improved, cost-effective and patient-centred equal care to rare and complex diseases. Methods Starting from existing standard methods for the creation and elaboration of patients’ care pathways, a specific methodology was created in order to take advantage of the dis...
Orphanet Journal of Rare Diseases
An amendment to this paper has been published and can be accessed via the original article.
Other orphan diseases
variables were collected. Statistical analysis was was performed with SPSS.25. Results: We includ... more variables were collected. Statistical analysis was was performed with SPSS.25. Results: We included 116 patients from which 55% were women, with a mean age at diagnosis of T1D 18.7 (± 12.3 SD) years. Average age at autoimmune disease diagnosis was 38.8 (± 12.2 SD) years. Average time of evolution between onset of T1D and autoimmune comorbidity was 10.1 (± 10.6 SD) years, except one patient with autoimmune thyroiditis 10 years before T1D. Autoimmune manifestations were showed by 19/116 patients (16.4%), with the following diagnoses: autoimmune hypothyroidism: 10 patients (8.6%); autoimmune polyglandular syndrome: 3 patients (2.6%), RA in 2 patients (1.8%). As well, 1 patient with celiac disease, 1 with cutaneous lupus erythematosus (CLE), 1 with psoriasis and another one with IgG4-related orbital inflammatory disease, (0.9% respectively). Three patients developed articular manifestations (2 rheumatoid polyarthritis and 1 with limited joint mobility or cheiroarthropathy). 4/19 patients (21%) showed cutaneous lesions (2 with vitiligo, 1 CLE and 1 with psoriasis.. Hematological alterations type pernicious anemia in one patient. No visceral involvement was found. Antibodies were detected to be organspecific: 7/17 antibodies to thyroid peroxidase (TPO) (+) and 3/17 antibodies to thyroglobulin (+) and one with anti-gliadin IgA (+). ANA (+) was detected in four patients (two fine granular pattern, one nucleolar and one homogeneous) with negative specificities and 1 patient RF (+). No Anti-CCP antibodies were detected. Conclusion: 1) 16% of patients with T1D presented autoimmune comorbidity at 10 years after the onset of endocrinopathy. 2) Autoimmune hypothyroidism was the most prevalent autoimmune manifestation (8.6%), followed by autoimmune polyglandular syndrome and RA, similar to other studies. 3) We highlight the unusual finding of IgG4-related orbital inflammation as comorbidity of T1D. 4) The cutaneous lesions (21%) were the most common clinical manifestation in patients with T1D and autoimmunity. We emphasize the absence of visceral involvement.
International Journal of Environmental Research and Public Health
The unexpected outbreak of the COVID-19 disease had significant and enormous repercussions on the... more The unexpected outbreak of the COVID-19 disease had significant and enormous repercussions on the healthcare systems, such as the need to reorganise healthcare organisations in order to concentrate resources needed to the care of COVID-19 patients and to respond in general to this health emergency. Due to these challenges, the care of several chronic conditions was in many cases discontinued and patients and healthcare professionals treating these conditions had to cope with this new scenario. This was the case of the world rare diseases (RDs) that had to face this global emergency despite the vulnerability of people with RDs and the well-known need for high expertise required to treat and manage them. The numerous lessons learned so far regarding health emergencies and RDs should represent the basis for the establishment of new healthcare policies and plans aimed at ensuring the preparedness of our health systems in providing appropriate care to people living with RDs in the case o...
Orphanet Journal of Rare Diseases, 2021
Background: As often seen in many chronic diseases, the disease impact on patients also induces a... more Background: As often seen in many chronic diseases, the disease impact on patients also induces a significant impact on the quality of life (QoL) of caregivers. Caregivers are the ones who are really willing to offer care in the general approach of many aspects of the disease, including the awareness of the diseases itself, the daily management of therapy, and all the potential challenges that living with a chronic disease can include. The main objectives of the study were to explore the perspectives and views of caregivers of Behçet's syndrome (BS) patients, to study their level of awareness on the disease and the impact that BS may have on their lives by means of a survey co-designed with caregivers and patients with this purpose. A survey was entirely co-designed with a panel of caregivers of patients living with BS patients. Results: Results show that BS caregivers organise their life according to the needs of the patient, that they (79%) considered themselves as helpful for the patient and 53% of them replied that they can freely express their emotions. Notably, 70% and 68% of the respondents reported they renounced with a variable frequency to sexual relationships due to concerns regarding the health of the partner or to the partner's illness, respectively. The majority (79%) of respondents indicated that they are familiar with the treatment taken by the patients and that 68% deal with the administration of some medicines. In terms of awareness, a good percentage (64%) of respondents reported to understand the illness and, in terms of education, 68% of participants are willing to take part in training programmes dedicated to BS. Conclusions: The results of this survey contribute to provide new information on BS caregivers and on their important role, and to identify areas in which new initiatives could provide BS caregivers (and therefore patients) with tools and knowledge that can empower them in reducing the burden of the disease on their lives, on families, and on the patient.
Nature Reviews Rheumatology
COVID-19 is an infectious disease caused by SARS-CoV-2, a newly discovered coronavirus. In March ... more COVID-19 is an infectious disease caused by SARS-CoV-2, a newly discovered coronavirus. In March 2020, the WHO declared the COVID-19 outbreak to be a pandemic and as of 17 November 2020, the WHO had reported more than 54 million confirmed cases and more than 1 million confirmed deaths attributable to the disease 1. The COVID-19 pandemic has had a considerable effect on different aspects and needs of patients with rare diseases, highlighted the many challenges faced by these patients as well as their families and caregivers during the pandemic 2 , including the interruption of routine medical care and rehabilitation therapies as well as many psychological barriers related both to isolation and to fear of infection with SARS-CoV-2 when receiving care in hospitals. These same challenges can be readily related to autoimmune diseases, in which the rate and mechanisms of COVID-19 transmission have raised many concerns among scientists and patients, especially considering the well-known susceptibility of these patients to infections owing to their altered immune systems and to the use of immunosuppressive therapies 3,4. In parallel, owing to the so-called deleterious 'cytokine storm' that might explain the rapid worsening of some patients with COVID-19, some of the most common DMARDs, such as hydroxychloroquine, baricitinib, corticosteroids and tocilizumab, have been used in clinical trials for patients with COVID-19 who have hyperinflammation 5,6. Thus, clinicians caring for patients with rheumatic diseases, as specialists in inflammation and the use of these drugs, have naturally been at the front line in treating COVID-19 in many cases. The interest in DMARDs has indeed helped to elucidate some of the pathogenetic mechanisms underlying COVID-19 7-9 , but it has also caused tensions and, in some cases, shortages in the supply of some DMARDs (in particular hydroxychloroquine) 10,11. COVID-19 has also affected the management and treatment of patients with rheumatic and autoimmune diseases during the COVID-19 emergency. Publications reporting these effects have described challenges to provision of care, management of clinical trials and the psychological state of patients and their carers 12,13. These challenges are particularly relevant in the case of rare and complex connective tissue and musculoskeletal diseases (rCTDs), in which knowledge related to diagnosis, treatment and complications is often limited and expertise is scattered. rCTDs comprise a large number of diseases and syndromes, including hereditary conditions, rare systemic autoimmune diseases and complex of rare and complex diseases, first on the risk of SARS-CoV-2 infection for people affected by these conditions, and also on the management of care and treatment during (and after) this global health emergency. The preliminary results of a Europe-wide survey organized by Rare Barometer (an initiative of the European Organisation for Rare Diseases), which was aimed at collecting the opinions, experiences
![Research paper thumbnail of Simone Ticciati, Pier Paolo Pasolini, Tutte le poesie, Milano, Mondadori 2003 [book review]](https://attachments.academia-assets.com/36981890/thumbnails/1.jpg)
](«Soglie», a. V, n. 3, dicembre 2003, pp. 74-6, Dec 2003
Pier Paolo PASOLINI, Tutte le poesie, a cura di W. SITI, Milano, Mondadori, 2003. L'edizione dell... more Pier Paolo PASOLINI, Tutte le poesie, a cura di W. SITI, Milano, Mondadori, 2003. L'edizione dell'opera omnia di Pier Paolo Pasolini nella collana dei Meri diani di Mondadori si è finalmente conclusa, e costituisce un sicuro punto di riferimento per ogni futuro studio, facilitandolo e sollecitando lo al tempo stesso. Ciò è dovuto innanzitutto alla mole complessiva, che Walter Siti quantificava cinque anni or sono in circa quindicimila pagine, e che alla fine ha quasi rag giunto quota diciassettemila, di cui poco più di quattordicimila costituite da testi di Pasolini. Quantità del genere non trovano riscontro nel panorama edi
![Research paper thumbnail of Simone Ticciati, Vincenzo Pirrotta, N’gnanzou’, Salerno, Plectica 2005 [book review]](https://attachments.academia-assets.com/36981800/thumbnails/1.jpg)
](«Misure critiche», n.s., a. III, n. 1-2, 2004, pp. 241-4, 2004
![Research paper thumbnail of Simone Ticciati, Erri De Luca, L’ospite incallito, Torino, Einaudi 2008 [book review]](https://attachments.academia-assets.com/36982006/thumbnails/1.jpg)
](«Soglie», a. XI, n. 1, aprile 2009, pp. 48-52, Apr 2009
![Research paper thumbnail of Simone Ticciati, Matteo Pelliti, Boicottando mongolfiere e ghigliottine. Alla ricerca degli uomini nascosti dietro le parole, Tapirulan, 2013 [book review]](https://attachments.academia-assets.com/36981412/thumbnails/1.jpg)
](Presentazione di Matteo Pelliti, Boicottando mongolfiere e ghigliottine. Alla ricerca degli uomin... more Presentazione di Matteo Pelliti, Boicottando mongolfiere e ghigliottine. Alla ricerca degli uomini nascosti dietro le parole, Tapirulan, 2013
(Libreria Blu Book, Palazzo Blu, Pisa, 6 giugno 2013)
Il programma della manifestazione del Museo Sveviano