Survey • The anonymous, 2-page survey was distributed at the PanCare Brno meeting. • 31 responses were received • Julie Byrne designed the survey, tabulated the responses and composed this report (Jbyrne@boyneresearch.ie)
Update from Constitution Group Elaine Sugden
Update from Constitution Group Elaine Sugden Written responses • Yes, in due course • Charge a yearly membership fee, eventually, perhaps not now • Find an executive secretary • Members should be defined and the definitive board elected in Amsterdam • Establish membership, then Board, then legal entity, then fee… • Charge a meeting registration fee, but not for nurses, parents, survivors….
Abstracts for ESLCCC2011 & SIOP Lars Hjorth
Abstracts for ESLCCC2011 & SIOP Lars Hjorth Written responses • Yes, update • Update of PanCare activities should be presented annually
Mentoring – being a mentee Cecile Ronckers
Mentoring – being a mentee Cecile Ronckers Written responses • We need to offer a mentoring service
ENCCA, new ideas, new projects Do you want PanCare to become more involved in European research projects? Riccardo Haupt
ENCCA, new ideas, new projects Do you want PanCare to become more involved in European research projects? Riccardo Haupt Written responses • Yes, but step by step, few issues at the moment • Big opportunity to collaborate!!
QOLOP, the Brno Study Marek Blatny & Tomas Kepak
Risk Stratification Mike Hawkins
Cardiovascular risk, cardiac function, physical activity and quality of life with and without long-term GH therapy in adult survivors of childhood acute lymphoblastic leukemia Cecilia Follin
Fertility after chemo- & radio-therapy in childhood and adolescence Anja Borgmann-Staudt
Fertility after chemo- & radio-therapy in childhood and adolescence Anja Borgmann-Staudt Written responses • Sound quality poor
Ototoxicity Amedeo Azzizi
Capacity building for research in PanCare Does PanCare need/want to have talks intended to build its capacity for research? Gill Levitt
Capacity building Gill Levitt Written responses • Yes, but I think it starts with good data registry/guidelines • Rather than research build a new professional profile • Yes, involving nurses, psychologists, etc
Considerations in writing an abstract for publication or presentation Julie Byrne
MetaNetworking group & SurvivorNet Alexandra Brownsdon & Marios Paulides
Any thoughts about the webpage? • PanCare profile – specialised subgroups should be linked like: cardiotoxicity, QoL, ototoxicity, fertility… with contact data, publications, guidelines. • We should try to fund and develop • Keep it on the ground with information useful for all website users • To clearly define the context • Include all the different language versions of the Erice document. • Post ideas for fund-raising on the website • Good. I would like contact details • Needs constant updating and surveillance
Any thoughts about the newsletter? • As at the moment good shape and format • Maybe we could introduce a quiz/competition relating to the venue for the next meeting, and the winner could be identified at the meeting. • Excellent work – keep it up! • I like it as it is: remind/inform community of events • Provide some space for SurvivorNet
Ideas for topics for future PanCare meetings? • Combine PanCare meetings with other meetings (SIOP/ESLCCC) • More nurses • Important to motivate people who develop treatment protocols to include the guidelines for follow-up • More research/science • How to participate in specific projects (proposals) • All to improve the care for the cancer survivor • In a collaborative way answers can be given to questions which can not be answered in small groups (each country) • Fertility • Bone morbidity after childhood cancer (osteonecrosis, BMD) • QoL working group session (preferably separately) • How to attract more countries? • Something about social activity of cured subjects • Fertility • Invited speaker? • We need to focus on a few subjects and make them “projects”, meaning to plan actions • I like Lars’ proposal to work on the idea of creating a new professional figure trained and assigned to the task of providing care • Thematic meetings!
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