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European Consortium for Communicating Stem Cell Research

Periodic Reporting for period 1 - EuroStemCell (European Consortium for Communicating Stem Cell Research)

Reporting period: 2015-01-01 to 2016-06-30

While stem cell research offers high hope for untreatable and life-threatening disease, the use of these cells raises ethical and practical concerns that vary across Europe. Furthermore, as the field is moving steadily towards its anticipated translational goals, unscrupulous operators are already offering patients bogus treatments, often at high financial cost. As a result, this research is the subject of great debate among scientists, clinicians, politicians, religious groups, business interests and the public in general. Both high-quality information and engagement with the fields of stem cell research and regenerative medicine are required to facilitate understanding and evidence-based decision-making among European stakeholders.

As part of the FP7 programme, the EU supported a Coordinating and Support Action called EuroStemCell (The European Consortium for Communicating Stem Cell Research), which developed as its centrepiece the multi-lingual website, the European Stem Cell Information Portal. Through the activities of the FP7 CSA, the EuroStemCell website has become the premier European reference site for stem cell information and discourse.
Under EU Horizon 2020 funding EuroStemCell brings together into a single grouping eight current EU-funded stem cell integrated projects, two European National Stem Cell Networks, the European Clinical Research Infrastructure Network, and twenty three other internationally recognized European stem cell research centres.
The objective of EuroStemCell under H2020 funding is to ensure continuation and further development of this existing information portal. We have reconfigured the EuroStemCell consortium, by enlarging it to comprise an extensive grouping of leading basic and translational stem cell researchers, along with ethicists, social scientists, and expert science communications professionals, from across Europe. This strong structure allows the EuroStemCell partners to achieve the following impacts:
1. Continuation of the EuroStemCell web portal as a European reference point for stem cell research
2. Dissemination of results of EU projects and other stem cell research to general audiences
3. Multi-lingual provision of factual information about stem cell research, including ethical and societal considerations
4. Provision of trusted high quality information on stem cells accessible to citizens and stakeholders across Europe
5. Stronger European presence on web-based information on stem cell research
6. Better information flow between European stem cell researchers
7. Strengthen European efforts to exploit scientific results in stem cell research for the benefit of patients.

EuroStemCell has the following objectives, which will be achieved over the thirty six months of the project in order to achieve the impact outlined above:

1.Information Management. To maintain and further develop an effective and sustainable infrastructure for coordinated management of factual stem cell information, including ethical and societal considerations, in Europe.

2.Online engagement & dissemination. To further develop the EuroStemCell website, as a high profile multi-lingual European stem cell information reference point, serving European citizens and stakeholders at all educational levels

3.Resourcing active engagement. To further resource active engagement with stem cell research in secondary and tertiary education, and support the scientific stem cell community to engage directly with the publics, throughout Europe.

4.Resources for decision-making & the media. To develop resources to facilitate decision-making around stem cell research and its exploitation in medical applications, tailored for patients, clinicians, regulators, politicians, and bio-industry.

5.Dissemination and capacity building. To promote dissemination and capacity building in communication and public engagement with stem cell research and regenerative medicine.

6. Evaluat
1. Information Management.
EuroStemCell represents the largest multinational partnership of stem cell research consortia, networks and institutions focussed on public engagement with stem cell research. There is an established and functional network of expertise which facilitates accurate and high-quality stem cell research information, including ethical and societal considerations.

2. Online engagement & dissemination.
The site has seen a 60% increase in non-English speaking visitors since 1st January 2015. The translation of key content in five European languages (French, Spanish, Polish, Italian and German) is 88% complete. There is an established network of translators. User engagement with eurostemcell-org has increased across all measures. Page views are increased on average 67% over the reporting period. The site now attracts nearly 100,000 sessions per month.

3. Resourcing active engagement.
There is an optimised multilingual toolkit for public engagement with stem cell research on Translation status 76% complete. The EuroStemCell partnership has delivered >294 stem cell engagement and outreach events/initiatives, across 14 European countries and reaching in excess of 3 million European Citizens.

4. Resources for decision-making & the media.
EuroStemCell has provided personalised responses to over 800 patient enquiries during this reporting period and initiated a collaborative and international audit project on how best to support enquirers. Specific resources on Stem Cell Tourism have been published on

5. Dissemination and capacity building.
EuroStemCell has delivered (in partnership) 10 training workshops for scientists involved in stem cell outreach or engagement initiatives. In addition, EuroStemCell provided a suite of five training workshops at the Hydra European Stem Cell Summer School. EuroStemCell facilitated a “Sharing best practice’ workshop for 31 public engagement and communication practitioners representing 20 research institutes and 16 European countries. EuroStemCell has maintained and developed partnerships with a broad range of stakeholders including: the scientific community, healthcare professionals, patient organisations, informal and formal educational organisations, industry, policy networks and media networks. The “Start as a Stem Cell” outreach toolkit for scientists has been disseminated to 15 additional European Research Institutes.

6. Evaluation and sharing of best practice.
EuroStemCell has worked collaboratively with an external evaluation agency to complete three large pieces of evaluation work. These are designed to establish the impact of the EuroStemCell project on three different groups; European Citizens, project stakeholders and the entire EuroStemCell partnership.
The reach of has far exceeded expectations. In English speaking countries (and a growing number of non-english speaking countries) people conducting google searches for terms such as “stem cell treatments” or “stem cells and leukaemia” will find content from near or at the top of their results on the first page. Therefore the collaborative effort of the EuroStemCell partnership is having global impact in empowering people with accurate and accessible information to include in their decision making processes. In addition, international stem cell research consortia and networks are now actively approaching EuroStemCell to form an outreach/engagement partnership. Thus multiplying and extending the reach and potential of the project far beyond the current partnerships.
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