SLIDE 1 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)
SLIDE 2
Update from Constitution Group
Elaine Sugden
SLIDE 3 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….
SLIDE 4
Abstracts for ESLCCC2011 & SIOP
Lars Hjorth
SLIDE 5 Abstracts for ESLCCC2011 & SIOP
Lars Hjorth
Written responses
- Yes, update
- Update of PanCare activities should be presented annually
SLIDE 6
Mentoring – being a mentee
Cecile Ronckers
SLIDE 7 Mentoring – being a mentee
Cecile Ronckers
Written responses
- We need to offer a mentoring service
SLIDE 8 ENCCA, new ideas, new projects
Do you want PanCare to become more involved in European research projects?
Riccardo Haupt
SLIDE 9 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!!
SLIDE 10
QOLOP, the Brno Study
Marek Blatny & Tomas Kepak
SLIDE 11
Risk Stratification
Mike Hawkins
SLIDE 12
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
SLIDE 13
Fertility after chemo- & radio-therapy in childhood and adolescence
Anja Borgmann-Staudt
SLIDE 14 Fertility after chemo- & radio-therapy in childhood and adolescence
Anja Borgmann-Staudt Written responses
SLIDE 15
Ototoxicity
Amedeo Azzizi
SLIDE 16 Capacity building for research in PanCare
Does PanCare need/want to have talks intended to build its capacity for research?
Gill Levitt
SLIDE 17 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
SLIDE 18
Considerations in writing an abstract for publication or presentation
Julie Byrne
SLIDE 19
MetaNetworking group & SurvivorNet
Alexandra Brownsdon & Marios Paulides
SLIDE 20 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
SLIDE 21 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
SLIDE 22 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
