1. Work Package 2 Dissemination of the project RARECARENet Aidan Hutchison on behalf of Professor Ian Kunkler University of Edinburgh

2. Information network on rare cancers Remit : Objectives and deliverables for WP2 How to improve the web-site to reach the different stakeholders Provide user friendly statistics Search for clinical guidelines Discussion of other means of dissemination Development of a clinical database

3. Information network on rare cancers Objectives and deliverables Development of web-based platform Covering guidelines and info on rare cancers, centres of excellence, patient organisations, epidemiological data Include social media (Twitter, Facebook) Facilitate collaboration with parties inside/outside RARECAREnet Link with EUCERD,EPAAC,EAARC, START,ESO and ECPC websites

4. Information network on rare cancers Milestones WP2 Consensus on improvement of website (M4) Dissemination plan including publications (M24) List of scientific meetings for project results (M28)

5. Information network on rare cancers Topics Existing RARECARE website – Existing unused/partially developed functions – Potential new functions New RARECARENet project – Alternatives to www for dissemination – Our initial proposal

6. Information network on rare cancers Uncluttered Clear menu News banner Multi-lingual

7. Large volumes of data can be downloaded

8. Information network on rare cancers Search tool – in development

9. Information network on rare cancers Search Tool Results

10. Information network on rare cancers Data Association Tool

11. Information network on rare cancers Analysis tool http://surveillance.cancer.gov/

12. Information network on rare cancers Alternatives to www for dissemination Social networking websites are a family of formats used to publish frequently updated works – Facebook – Twitter – RSS feed Used to give ‘stickiness’ to websites or projects Adding content & responding are burdensome Who will author output and RARECAREnet timely responses? Dealing with queries from patients

13. Information network on rare cancers Alternative to social networking RARECARENet web site where people can sign up to receive emails about – Regular newsletter with input from each work package – Announcements – An area of the web site that allows users to respond to items in the newsletter or announcements

14. Information network on rare cancers Knowledge System Library Area for each WP in web site Communal area that pulls data together Informed patients make informed choices – http://www.cmlsupport.org.uk/about http://www.cmlsupport.org.uk/about Data considerations User requirements

15. Information network on rare cancers Clinical database What data do you want to collect? Patient identifiable information – permission Increase confidentiality – decrease integrity – How do I know if a patient has been added Information system – the sum of all its parts

16. Information network on rare cancers Clinical database / disease registry What would you like? Case ascertainment? Cross-sectional (i.e. one point in time)? Follow-up (how often)? What sorts of data? – Demographic – Clinical – Pathological – Radiographic – etc.

17. Information network on rare cancers Summary Existing website – Existing unused/partially developed functions – Potential new functions New project – Alternatives to www for dissemination – Our initial proposal But we need your feedback!