Patient and public involvement in research: a survey on experience, opinions and training needs of gynecologic oncologists in two collaborative groups in Italy.

Background: The involvement of people with experience of disease, caregivers, and patient representatives as partners in research is growing, but varies by country and research field. This survey aimed to investigate opinions, experience and training needs on Patient and Public Involvement (PPI) of clinicians and nurses from two Italian collaborative groups in gynecologic oncology research.

Methods: This cross-sectional, observational study was conducted through an online self-administered questionnaire addressed to health professionals participating in the Mario Negri Gynecologic Oncology (MaNGO), and the Multicenter Italian Trials in Ovarian cancer and gynecologic malignancies (MITO) groups, which comprise Italian reference centres for gynecologic oncology research.

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Informed consent is mandatory for an individual to receive a clinical service, yet the process is often still tough and twisty. This is a hot topic also for patient associations and thus PaLiNUro associaton set the objective to produce, with a multidisciplinary approach, a simple but comprehensive information note to the informed consent for people with urothelial cancer about to undergo to a radical cystectomy surgery. After assessing as not valid 12 information notes from nine Italian hospitals, the multidisciplinary group produced an eight-page document accompanied by a supplemental document for further details, both available on PaLiNUro website.

Citizens' views on prices of medicines reimbursed by the National Health Service: Findings from Italian online focus groups.

Introduction: Access to medicines is one of the biggest challenges to health systems, affecting society and individuals. This study aims to explore citizens' opinions, perceptions and attitudes on the model of medicines' research and development (R&D) and price setting of medicines reimbursed by the Italian National Health Service.

Materials And Methods: We run four online focus groups, analysed through thematic analysis.

[Cystic fibrosis carrier screening: a Health technology assessment.].

This project of Health technology assessment was aimed at defining the impacts of offering a cystic fibrosis (CF) carrier screening to the general population, compared to the current situation, where the test is offered to individuals at high-risk to give birth to a child with CF. Results revealed: i) a lack of robust and updated data; ii) a return on investment up to six years from the screening's introduction, despite important economic and organizational efforts; iii) a general positive attitude of healthcare professionals, people with CF, families and general population; iv) possible issues related to the social impact.

Consumers' and health providers' views and perceptions of partnering to improve health services design, delivery and evaluation: a co-produced qualitative evidence synthesis.

Background: Partnering with consumers in the planning, delivery and evaluation of health services is an essential component of person-centred care. There are many ways to partner with consumers to improve health services, including formal group partnerships (such as committees, boards or steering groups). However, consumers' and health providers' views and experiences of formal group partnerships remain unclear.

Identifying unanswered questions and setting the agenda for future systematic research in Multiple Sclerosis. A worldwide, multi-stakeholder Priority Setting project.

Background: Eliciting the research priorities of people affected by a condition, carers and health care professionals can increase research value and reduce research waste. The Cochrane Multiple Sclerosis and Rare Disease of CNS Group, in collaboration with the Cochrane Neurological Sciences Field, launched a priority setting exercise with the aim of prioritizing pressing questions to ensure that future systematic reviews are as useful as possible to the people who need them, in all countries, regardless of their economic status.

Method: Sixteen high priority questions on different aspects of MS were developed by members of a multi-stakeholder priority setting Steering Group (SG).

["Donnainformata-mammografia": a decision aid developed and validated in the Italian setting].

The decision aid "Donnainformata-mammografia" (https://www.donnainformata-mammografia.it/en/) has been developed with the aim of providing clear information on the benefits and harms of breast cancer screening, and the controversies on the relationship between mortality reduction and overdiagnosis.

The CORBEL matrix on informed consent in clinical studies: a multidisciplinary approach of Research Infrastructures Building Enduring Life-science Services.

Background: Informed consent forms for clinical research are several and variable at international, national and local levels. According to the literature, they are often unclear and poorly understood by participants. Within the H2020 project CORBEL-Coordinated Research Infrastructures Building Enduring Life-science Services-clinical researchers, researchers in ethical, social, and legal issues, experts in planning and management of clinical studies, clinicians, researchers in citizen involvement and public engagement worked together to provide a minimum set of requirements for informed consent in clinical studies.

Recent advances on smart glycoconjugate vaccines in infections and cancer.

Vaccination is one of the greatest achievements in biomedical research preventing death and morbidity in many infectious diseases through the induction of pathogen-specific humoral and cellular immune responses. Currently, no effective vaccines are available for pathogens with a highly variable antigenic load, such as the human immunodeficiency virus or to induce cellular T-cell immunity in the fight against cancer. The recent SARS-CoV-2 outbreak has reinforced the relevance of designing smart therapeutic vaccine modalities to ensure public health.

Emerging glyco-based strategies to steer immune responses.

Glycan structures are common posttranslational modifications of proteins, which serve multiple important structural roles (for instance in protein folding), but also are crucial participants in cell-cell communications and in the regulation of immune responses. Through the interaction with glycan-binding receptors, glycans are able to affect the activation status of antigen-presenting cells, leading either to induction of pro-inflammatory responses or to suppression of immunity and instigation of immune tolerance. This unique feature of glycans has attracted the interest and spurred collaborations of glyco-chemists and glyco-immunologists to develop glycan-based tools as potential therapeutic approaches in the fight against diseases such as cancer and autoimmune conditions.

Critical observations on and suggested ways forward for healthcare communication during COVID-19: pEACH position paper.

Objective: Communication in healthcare has influenced and been influenced by the COVID-19 pandemic. In this position paper, we share observations based on the latest available evidence and experiential knowledge that have emerged during the pandemic, with a specific focus on policy and practice.

Methods: This is a position paper that presents observations relating to policy and practice in communication in healthcare related to COVID-19.

[Covid-19 and clinical-epidemiological research in Italy: proposal of a research agenda on priority topics by the Italian association of epidemiology].

Background: the Covid-19 pandemic has provoked a huge of clinical and epidemiological research initiatives, especially in the most involved countries. However, this very large effort was characterized by several methodological weaknesses, both in the field of discovering effective treatments (with too many small and uncontrolled trials) and in the field of identifying preventable risks and prognostic factors (with too few large, representative and well-designed cohorts or case-control studies).

Objectives: in response to the fragmented and uncoordinated research production on Covid-19, the   italian Association of Epidemiology (AIE) stimulated the formation of a working group (WG) with the aims of identifying the most important gaps in knowledge and to propose a structured research agenda of clinical and epidemiological studies considered at high priority on Covid-19, including recommendations on the preferable methodology.

Publisher Correction: A stabilized glycomimetic conjugate vaccine inducing protective antibodies against Neisseria meningitidis serogroup A.

A Correction to this paper has been published: https://doi.org/10.1038/s41467-020-20120-4.

Health care for undocumented immigrants during the early phase of the Covid-19 pandemic in Lombardy, Italy.

Despite concern on the impact of coronavirus disease 2019 (COVID-19) pandemic on undocumented immigrants, quantitative evidence on the issue is scant. We analyze socioeconomic and health conditions of 1590 undocumented immigrants in Milan, Lombardy, one of the regions with the highest COVID-19 clinical burden in the world that does not guarantee access to primary care for these individuals. We document a sharp reduction in visit number after lockdown, with 16% frequency of acute respiratory infections, compatible with COVID-19.

A stabilized glycomimetic conjugate vaccine inducing protective antibodies against Neisseria meningitidis serogroup A.

Neisseria meningitidis serogroup A capsular polysaccharide (MenA CPS) consists of (1 → 6)-2-acetamido-2-deoxy-α-D-mannopyranosyl phosphate repeating units, O-acetylated at position C3 or C4. Glycomimetics appear attractive to overcome the CPS intrinsic lability in physiological media, due to cleavage of the phosphodiester bridge, and to develop a stable vaccine with longer shelf life in liquid formulation. Here, we generate a series of non-acetylated carbaMenA oligomers which are proven more stable than the CPS.

A dynamic web-based decision aid to improve informed choice in organised breast cancer screening. A pragmatic randomised trial in Italy.

Background: Improving the quality of information and communication is a priority in organised breast cancer screening and an ethical duty. Programmes must offer the information each woman is looking for, promoting informed decision-making. This study aimed to develop and evaluate a web-based dynamic decision aid (DA).

The IN-DEEP project "INtegrating and Deriving Evidence, Experiences, Preferences": a web information model on magnetic resonance imaging for people with multiple sclerosis.

Introduction: The IN-DEEP project aims to provide people with multiple sclerosis (PwMS) with evidence-based information on magnetic resonance imaging (MRI) in diagnosis and monitoring the disease through a website, and to collect their opinions on the clarity of the website's contents and its usefulness.

Methods And Analysis: A multidisciplinary advisory board committee was set up. We investigated the experience, attitude and information needs on MRI through three meetings with 24 PwMS, facilitated by an expert researcher and an observer.

Industry funding of patient and health consumer organisations: systematic review with meta-analysis.

Objective: To investigate pharmaceutical or medical device industry funding of patient groups.

Design: Systematic review with meta-analysis.

Data Sources: Ovid Medline, Embase, Web of Science, Scopus, and Google Scholar from inception to January 2018; reference lists of eligible studies and experts in the field.