WP3 Evaluation – six months report Sakari Karjalainen and Henna Degerlund JARC General Assembly, Oct 16th, 2017 Istituto Nazionale Tumori, Milano 29.12.2018

Tasks of Evaluation Main task Main task is to verify if the project is being implemented as planned and are the objectives of the project reached. 29.12.2018

Work done and encountered problems with possible causes (6 months report) WP3 Leader Sakari Karjalainen participated the Steering Committee’s teleconference, held in June 12th. WP3 organized the 1st Advisory Committee meeting in Helsinki, on September 3–4. Participants: Tit Albrecht, Karel van Damme, Helena Kääriäinen, Paolo Casali, Annalisa Trama, Sakari Karjalainen, Henna Degerlund. Evaluation of JARC deliverables concerning the first year of JA. The work plan of the Advisory Committee was accepted by the members of Advisory Committee during the Helsinki meeting. 29.12.2018

Produced documents The minutes of Advisory Committee meeting Evaluation of the WP2 deliverables (leaflet, website and dissemination strategy) as a part of the minutes of the Advisory Committee meeting (see above) A web-based questionnaire for gathering participants’ feedback on workshops with external experts. Will be released after the General Assembly in October. 29.12.2018

Next steps and proposals with possible problems/risks (up to April 2018). The first JARC evaluation report will be ready in November 2017. After April 2018 M18, 2nd Advisory Committee meeting will be held on Sep 2–3 in Helsinki, deadline 01/10/2018 D3.2, JARC second evaluation report, deadline 30/11/2018 29.12.2018

We focus on: Evaluation is focused on project implementation and considering the quality of project’s deliverables. 29.12.2018

JARC Schedule – Deliverables 29.12.2018

Deliverables, the first year (M1-M12): WP2: Leaflet (M2), Dissemination plan (M5), Project website (M6) WP1: Interim project report (M12) WP3: JARC 1st evaluation raport (M13) 29.12.2018

Deliverables, the second year (M13-24) WP4: List of rare cancers, list of differences and commonalities between rare cancers registration and rare diseases registration WP6: Report and survey on availability of clinical practice guidelines for all rare cancer families WP7: Proposals to improve collaborative clinical trails in the EU M22 (8/2018) WP10: Recommendations on policy measures on rare cancers for national plans and strategies on cancers and rare diseases 29.12.2018

Deliverables, the second year (M13-24) WP1: Interim project report WP4: Recommendations for the stadradized estimation of rare cancers indicators at the European and country level WP5: Map / Database of expert centres and networks on rare cancers in Europe WP6: Report on the assessment of the quality of existing clinical practice guidlines (for each family of rare cancers) WP7: Report on standardization of clinical data and patient-centered clinical outcomes for big data optimal exploitation and connection to virtual biobanks and quality assurance WP8: Map of available medical education resources and recommendations on their integration with ERNs WP9: List of existing preclinical paediatric cancer models and research teams M25 (11/2018) WP3: JARC 2nd evaluation raport 29.12.2018

The base and tools of evaluation The evaluation is based on process, output and outcome indicators for each WP. Tools of evaluation are satisfaction questionnaires about project’s meetings and workshops the professional evaluation, comments and opinion of advisory committee 29.12.2018

WP3 Contact information sakari.karjalainen@cancer.fi, +358400818910 henna.degerlund@cancer.fi Cancer Society of Finland Unioninkatu 22 FI-00130 Helsinki Finland 29.12.2018