Chair: Inmaculada jarrín
Co-Chair: David Dalmau
HIV infection is still one of the largest public health problems in Spain in terms of burden of disease and health related costs. It is estimated that 150,000 (130.000-170.000) persons live with HIV in Spain, of whom 30% are unaware of their infection status. HIV prevalence in the general population is 0.4% and undiagnosed HIV prevalence accounts for 0.1%. Additionally, close to 50% of the new 3366 HIV reports from the whole country in 2014 were diagnosed late. These new HIV reports account for a rate of 9.34 per 100.000 persons, similar to the trend in previous years whch have, globally, remained stable in the period 2009-2014. However, marked differences by transmission category exist in HIV rates trends; while descending trends are observed for persons who inject drugs (PWID) and heterosexual women, stable patterns are seen in men who have sex with men (MSM) and heterosexual men. Further, when stratifying MSM by country of origin, opposite tendencies are observed; for Spanish MSM, rates continue to increase while they decrease in migrant MSM.
In the last few years, major scientific breakthroughs for the prevention and management of HIV have taken place; Pre-exposure prophylaxis (PrEP) to reduce the risk of HIV acquisition and the results of START and TEMPRANO trials providing the evidence that immediate ART improves clinical outcomes. The later adds to previous HPTN052 findings which showed that ART reduced the risk of HIV transmission leading to the concept of Treatment as Prevention (TasP). A number of challenges need to be met for these innovations to have an impact at the population level and in order to meet the 90-90-90, or rather – for Europe - 95-95-95 -, UNAIDS objectives (95% of all positive individuals diagnosed, 95% of these on ART, and 95% of these virally-suppressed). Understanding complex epidemics, such as the Spanish one, and optimizing data sources and infrastructures to provide the best epidemiological estimates, is no doubt among the priorities of visionary research to translate science into action.
The overall objective of this program is to provide strategic infrastructures and innovative procedures to integrate epidemiological, clinical and health-care utilization data, biological samples and patients' reported outcomes from different sources to support public health action and policy implementation to reduce HIV-related morbidity, mortality and on-going transmission.
This overall objective will be met through the direct action of the five work packages, each of which will address the following specific objectives:
- To provide the framework within which to coordinate, design, manage, fulfill ethics requirement & data protection, and analyze data with the most up-to-data methodology in the Cohort of the Spanish AIDS Research Network (CoRIS) and its associated Theme Satellites, and link the data with the coded samples stored in the Biobank.
- To improve data linkage between HIV cohorts and surveillance systems for monitoring the HIV epidemic in Spain and providing useful information for prevention and control activities, to estimate the stages of continuum of care using different data sources, the proportion of recent infections among new HIV diagnoses and HIV incidence at population level.
- Prepare the necessary infrastructure to set up a new cohort of people starting PreP (CoRIS_PreP) and upon PreP approval, investigate uptake, acceptability and impact of PreP in terms of adherence and adverse effects of the medication, HIV incidence, drug resistance, sex behavior and incidence of other STIs.
- To ensure that relevant scientific evidence produced in the network of excellence is translated into health policy and clinical practice and that cohort-delivered through close collaboration of the two scientific societies dedicated to HIV work in Spain; SEISIDA and GeSIDA.
- To develop a collaborative working network among the academic researchers, clinicians, policy makers and the Community, disseminate the work done in the network to the general public, civil society and other social agents through innovative strategies and generation of tools for e-Health (a mobile centric application -App-; “You make CoRIS” and “My way”).
Work Package 1 (WP1): CoRIS Management & Structure & Link with repositories
Leaders: Inma Jarrín and Jose Luis Jiménez
The main objective of this WP is to provide the framework within which to coordinate, design, manage and analyze data from the Cohort of the Spanish AIDS Research Network (CoRIS) and its associated Theme Satellites, and link the data with the coded samples stored in the Biobank. In this WP we are specifically focused in the following tasks:
- Harmonization and optimized use of CoRIS data: We will generate high quality datasets, following the validated HICDEP (HIV Cohorts Data Exchange Protocol) process which allows for the comprehensive integration of cohort data, ensuring harmonization, facilitating data sharing to undertake statistical analyses, and reducing substantially the workload for participating in collaborative projects. We will also carry out all needed processes to adapt CoRIS to ISO quality specifications.
- Management of ethical issues: To oversee that all ethical/legal activities related to the use of primary and/or secondary data are in accordance with latest ethics and data protection legislation.
- Scientific management: To coordinate the reception of research proposals to be evaluated by the CoRIS and Biobank steering committee providing feedback and ad-hoc datasets to researchers. We will update authorship protocols, allocate authorships and coordinate the circulation of manuscripts to cohort investigators.
- Linkage to cohort data with external records: Will include activities aimed to link data from CoRIS cohort to external records (e.g. mortality registry and CMBD) validating matching procedures. Collection and harmonization of hospitalization data will allow us to examine whether hospitalizations for adverse drug reactions or long-term toxicities are associated with particular drug regimens and help to guide allocation of healthcare resources by enhancing our understanding of factors associated with in-patient rates.
- Quality of life - ProQOL: We will collect and harmonize data for measuring well-being/health-related quality of life, stigma and behavioral patterns.
- Methodology: We will ensure and facilitate the use of the optimal methods for study design and analysis and provide training on novel statistical methods. We will also use mathematical models to improve our estimates of the number of people living with HIV, including those HIV-positive but still undiagnosed.
- Life expectancy and excess of mortality: We will provide estimates and prognostic factors of life expectancy and excess of mortality of HIV-positive patients from CoRIS in comparison to the general population.
You can download her Quality politics (spanish)
Work Package 2 (WP2): Continuum of Care and New Infections Estimates
Leaders: Asunción Díaz and Lucía Pérez
The main objective to this work package is to improve linkage between data from HIV cohort and HIV surveillance systems for monitoring the HIV epidemic in Spain and providing useful information for prevention and control activities.
Specifically, we will estimate the stages of continuum of care in Spain using different data sources. Moreover, we will evaluate the proportion of recent infections among new HIV diagnosed in Spain and we will explore different methodologies to estimate HIV incidence at population level using HIV surveillance data and data from test to identify recent infections.
Work Package 3 (WP3): Cohort of people starting PrEP in the Spanish Network of Excellence on HIV research (CoRIS_PrEP)
Leaders: Julia del Amo and Melchor Riera
The overall aim of this work package is to design and prepare the necessary infrastructure to set up a new cohort of people starting PreP in the centers participating in the Spanish Network of Excellence on HIV research (CoRIS_PreP). PreP is not available in Spain as yet, but it is anticipated it will soon be. Therefore, we will assess the feasibility of this project and have the infrastructure ready by the time PreP is made accessible for the prevention of HIV in Spain. Following PreP approval, we will investigate the uptake, acceptability and impact of PreP. Specifically, we will assess adherence to PreP schedules and follow-up, adverse effects of medication as well as measuring HIV incidence, including the assessment of drug resistance, self-reported sex behavior and incidence of other STIs.
Work Package 4 (WP4): Linking science to policy and clinical practice
Leaders: David Dalmau and Antonio Rivero
The overall aim of this work package is to ensure that the relevant scientific evidence produced in the network of excellence is translated into health policy and clinical practice and that the cohort delivers the outputs required for policy, public health and advocacy work. This will be achieved through close collaboration of the two scientific societies devoted to HIV work in Spain; SEISIDA and GeSIDA, and its associated members.
The Spanish Aids Interdisciplinary Society, SEISIDA, is a scientific society founded in 1988. The multidisciplinarity constitutes a characteristic and a value that vertebrate its reason of being and its actions, constituting the only space where all the disciplines and actors involved in the HIV field converge.
The Group for the Study of AIDS, GeSIDA, is a scientific society composed by physicians caring for HIV-positive patients and performs clinical and basic research. GeSIDA develops each year the Guidelines for treatment and management of HIV. Thus, both societies cover the full spectrum of HIV infection - treatment, assistance, epidemiology, prevention, social aspects, basic science, nursing care and psychology.
In this WP we are specifically focused in the following tasks:
Task 4.1 Interdisciplinary work in HIV prevention, testing and care beyond clinical work
- Active involvement of RIS network (as well as Gesida) in national Seisida's meetings.
- Using SEISIDA as a transmitting agent to NGOs through national meetings and other communication routes (partners emailing, social networks,…).
- Maximizing common projects with SEISIDA to decrease HIV diagnostic delay in Spain.
- Sharing data from on-going SEISIDA projects.
- Translating health policies derived from our scientific and social knowledge to resource limited settings.
Task 4.2 Impact on national policies & guidelines to improve of clinical care
- Active involvement of RIS network (as well as SEISIDA) in national GeSIDA's meetings and conferences. GeSIDA anual conference will be the forum where RIS will present research works.
- Annual meeting involving RIS and GeSIDA members to establish a flow of work between both groups to identify key HIV research and strategies topics to communicate to Health Authorities.
- Active participation of RIS members in “Health Talks” organized by GeSIDA in which policy makers, scientists and physicians share perspectives about HIV and related comorbidities.
- Participation of RIS in the elaboration of the Spanish guidelines for the diagnosis, prevention, treatment, both in adults and children, management of comorbidities, Pre and Post-Exposure Prophylaxis.
- Production of yearly estimates of GeSIDA quality indicators for patients living with HIV.
Work Package 5 (WP5): Innovation, dissemination and eHealth
The objective of this work package is to promote a collaborative network structure among the scientific community, clinicians who care for people living with HIV/AIDS, policy makers and the patients’ community.
This collaborative structure (called "Tú haces CoRIS") will allow us to adapt CoRIS Cohort lines of research to the interests of general society and, specifically, of the patients’ community.
The purpose of this work package is to allow the community itself to lead part of the research objectives within CoRIS Cohort. WP5 will also contribute to the dissemination of scientific knowledge to civil society and other relevant agents: media, NGOs, communities of people living with HIV... Our ultimate goal is to maximize the impact of the knowledge generated from the scientists on the people’s health.
To achieve this objective, WP5 promotes innovative research strategies and scientific dissemination of results. For example, this work package will design eHealth tools, based on the information and communication technologies, to develop interventions aimed at the prevention, diagnosis, treatment, follow up and management of HIV-related health issues. Our ultimate goal is to improve efficiency and reducing costs to the Spanish Health System.