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Work Package 2

RARECARENet. Work Package 2. Dissemination of the project. Aidan Hutchison on behalf of Professor Ian Kunkler. University of Edinburgh. Remit :. Objectives and deliverables for WP2 How to improve the web-site to reach the different stakeholders Provide user friendly statistics

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Work Package 2

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

  2. 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. 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 Objectives and deliverables

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

  5. Topics • Existing RARECARE website • Existing unused/partially developed functions • Potential new functions • New RARECARENet project • Alternatives to www for dissemination • Our initial proposal

  6. Uncluttered • Clear menu • News banner • Multi-lingual

  7. Large volumes of data can be downloaded

  8. Search tool – in development

  9. Search Tool Results

  10. Data Association Tool

  11. Analysis tool http://surveillance.cancer.gov/

  12. 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. 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. 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 • Data considerations • User requirements

  15. 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. 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. 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! Summary

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