Press Release No. 51/2022 - Participatory Science, Citizens and Institutions together to Collect and Share Ideas and Projects at the Service of People with Rare Diseases

ISS, 15 luglio 2022 - 

The call for Citizen Science has been launched. This is a project by the ISS and the Ministry of Health for which a dedicated site is now operational

The call for tenders for the project "Participatory science for improving the quality of life of people with rare diseases" was launched today. The project is coordinated by the National Centre for Rare Diseases (CNMR) of the Istituto Superiore di Sanità and financed by the Ministry of Health as part of a broader partnership agreement. From today until 30 October 2022, citizens, researchers, schools, associations and institutions are invited to share operational ideas, solutions, technologies, and strategies aimed at providing practical help to people with rare diseases in dealing with the small and big challenges of every day life. The ideas and projects will be gathered on an ad hoc web site where they will be illustrated and available to everyone.

The project, which comprises three committees (technical-operational, promotional and scientific committees), will be presented today, 15 July 2022, at 10.30 during the webinar organized by the CNMR entitled, "Participatory Science for the Improvement of the Quality of Life" (link to participate: https://www.malattierare.gov.it/eventi/dettaglio/4490).

“Citizen science represents a great opportunity to involve society in actively participating in the common good - says Silvio Brusaferro, President of the ISS - in a context that is facilitated by greater access to scientific information and digital tools. The project we are presenting today is characterized by the joint involvement of civil society and of the institutions, where the members of the former, often patients themselves and in any case people from "the field", will develop ideas and solutions, while the latter will disseminate them by making then available them on a special platform available to everyone. A sort of virtuous circle where the solutions developed for improving the living conditions of people with a specific pathology will be of benefit also for people experiencing similar difficulties".

“A wonderful initiative which we hope will produce concrete benefits – declared Domenica Taruscio, Director of the National Centre for Rare Diseases of the ISS – which we expect will improve the daily life of people with rare diseases and disabilities. We believe that citizen science can unleash disruptive forces capable of breaking down barriers and of overcoming the limits of the silos, i.e. the way of conceiving science as a field in which specific skills do not need a continuous interaction and exchange with other sectors. On the contrary by involving as many citizens as possible citizen science is capable of understanding the difficulties of patients and therefore of co-planning possible solutions. We also expect other important outcomes from this initiative, such as a greater dissemination of knowledge, the enhancement of the skills of people who are not necessarily experts of a scientific field, and a greater awareness of society as a whole about rare diseases and disability in general".

"The Participatory Science Project is part of an already fruitful and tested collaboration with patient associations - said Sergio Iavicoli, Director General of Communication and European and International Relations of the Ministry of Health - but at the same time it adds an additional step, in that it will expand the number of people called upon to contribute all together to improving the lives of patients and their families and to improving the proximity of the institutions. The project is also part of the communication campaign launched on the occasion of the Rare Disease Day celebrated recently and which will continue with videos and information dedicated to making known the resources of the inter-institutional portal www.malattierare.gov.it".

The call

Participation is free, open to all citizens, male and female researchers (without age limits), schools, associations, and institutions. Each contribution – concept notes, ideas being developed or fully developed solutions - may concern one or more of the following areas:

• mobility (e.g. tools or strategies to facilitate movement and physical activities);
• autonomy / strategies for taking care of daily needs;
• communication (e.g. alternative use of computer aids, Apps);
• cognitive skills (e.g. alternative training methods, innovative solutions for learning);
• sport / leisure;
• managing emotions (e.g. managing stress, anxiety, aggressiveness);
• social, school and work inclusion strategies.

All admitted contributions – evaluated by a multidisciplinary Scientific Committee consisting of representatives of citizens, patients, and health professionals - will be periodically available online in the dedicated section called interinstitutional portal, with a link to the thematic site of Participatory Science.

The contributions will also be disseminated through various communication channels including the RaraMente newsletter and the social media (TW, FB, YouTube, etc.) of the Rare Diseases toll-free help-line of the ISS National Center for Rare Diseases. The five contributions with the highest score will be illustrated through ad hoc videos by December 2022.

• For more information, see the Call