Synchros Project | synchros.eu

The SYNCHROS-Background

A cohort represents a group of people followed over time. In cohort studies, medical, health, behavioural and contextual information is collected systematically. Data may be obtained e.g. from population surveys, clinical studies or medical treatments and interventions. Biological material may be stored in Biobanks.

The coverage of data is usually defined to answer specific research questions. Studies are conducted by different teams of researchers of different institutions. Accordingly, the definition of variables, measures, classifications, the comprehensiveness and quality of data differs between different cohorts.

The relevance and statistical reliability of findings depend both on the size of the cohorts and the quality of the data. Often results are not transferable to other populations or regions. Harmonising data over several cohorts, however, can greatly extend the significance of the results.

In particular, research on rare diseases, or research supporting personalised medicine, requires large cohorts in order to find a statistically representative number of individuals who share rare characteristics.

The Project: SYNergies for Cohorts in Health: integrating the ROle of all Stakeholders

The SYNCHROS-project started Jan. 1^st, 2019 and ends June 30^th, 2022. The work towards the goal of Coordination and Support for “Synchronising Cohorts and Population Surveys in Europe and worldwide” is structured by 8 work packages and the following three phases:

WP-Descriptions

Workpackages - Overview

Workpackage 1

WP1 focuses on a mapping of completed and ongoing patient, clinical trial and population cohorts covering descriptions of the study purpose, characteristics of the study populations and coverage and the measurements that are available. Specific objectives are:

To define the methodology for mapping the European/international landscape for longitudinal cohorts.
To review the state-of-the-art of European and international population-based cohorts, patients cohorts and control trials.
To create a catalogue of cohort studies.

Phase I

Workpackage 2

WP2 works on identifying the best methods for integrating cohort data to enable the harmonisation of past and future data collection. Concretely:

1. To identify methods to harmonise datasets that adjust for selection, information or content bias, and analytical approaches to maximise the value of these cohort data.
2. To identify the main efforts (at a European and international level) done in the last 15 years for data harmonisation and integration of different health cohorts.
3. To define the standards for selected variables and their values, and for standardising data documentation and data exchange.
4. To construct a core set of variables identifying what kinds of data ought to be collected across cohorts to assemble sufficient information on health outcomes of key interest, including lifestyles, social and environmental determinants, etc.
5. To produce a strategy brief on these issues for the stakeholder dialogue in phase II.

Phase I

Workpackage 3

WP3 focuses on identifying solutions for practical, ethical and legal challenges in integrating data across patient, clinical trial and population cohorts. This includes the following objectives:

1. Determine the practical, ethical and legal obstacles to accessing European cohort data and other preconditions to data integration across cohort studies.

2. Propose ethical guidelines for the use of cohort data, in current and future developments in data collection technologies and kinds of data collected.

3. Produce a strategy brief that sets out the context of practical, legal and ethical issues concerning optimising cohort data, the institutional and other parameters that shape strategic options for resolving these issues and setting out the most feasible and evidence- based strategic options that would resolve these issues, their benefits and costs.

Phase I

Workpackage 4

Taking stock of emerging and new data collection technologies and types of data and their characteristics and potential impact on the development of future cohort studies. Examples of such technologies are social media, wearables and smart phone sensors.

Phase I

Workpackage 5

WP5 is all about stakeholder dialogues. Representative stakeholders from all relevant societal domains are being identified and invited to join Synchros-dialogues based on strategy briefs. The objectives are to determine best practice to overcome practical, ethical, legal and methodological challenges in networking and integrating data across patient, clinical trial and population cohorts. This is to contribute to a harmonised approach to tackle the issues identified and to motivate the stakeholders to further work towards practical solutions.

Phase II

Workpackage 6

WP6 focuses on developing a sustainable strategy for the optimisation of cohort data in Europe and to define a strategy agenda for a better coordination of cohorts globally. Specific objectives are:

• To review outputs from stakeholders dialogues on methodological and practical, ethical and legal issues related to cohort harmonisation

• To define standards to improve future sample and data collection in patients and population cohort studies

• To define an international strategic agenda for better coordination of cohorts globally

Phase III

Workpackage 7

Dissemination and Communication: WP7 provides extensive visibility to the project in order to optimize the use and uptake of the knowledge generated. The dissemination activities are based on the products emerging from the different WPs and ensures the widest possible dissemination of the results and final recommendations to the community of stakeholders. Major instruments for communication and dissemination are the project website which provides access to major project results including access to the SYNCHROS repository, social media, conferences, publications and periodic newsletters sent to about 2.500 stakeholders.

WP7 Dissemination and Communication Roadmap 2021-2022

Phase I- III

Workpackage 8

Project management and coordination: This WP is to:

Provide the overall scientific direction and to drive the progress of the project, steering efforts of the partners for the achievement of the project’s objectives and milestones.
Set-up and maintain the project management structure that ensures an efficient operational management including administrative, financial and legal issues, and appropriate liaison with the European Commission.
Provide procedures and tools for ensuring that all results are delivered on time, with an adequate quality level and within cost, including quality control procedures on deliverables.
Enable the appropriate communication and work dynamics to help drive the whole Consortium as a team towards successful completion.

Phase I- III

Outlook

We interact with relevant initiatives worldwide. The results of our work, e.g. from mapping the cohort study landscape, compilations of legal and ethical requirements and methodological concepts, will be shared and translated into strategy briefs to facilitate stakeholder dialogues. We also aim to make sustainable recommendations on standards to improve the compatibility of future data collection, e.g. for data sharing methods towards an international strategic agenda to improve the coordination of cohorts globally.

Expected results are seen as an essential precondition for the development of stratified and personalized medicine and more efficient health policies.

Key stakeholders have initiated the project and leading representatives are involved in the project via a scientific advisory board and the ethics committee. The broader community of interested stakeholders is invited to get involved and to share results and comment via various communication channels such as email, blogs, Twitter and LinkedIn – all accessible via our website synchros.eu.