Communication and News developed and disseminated Period: October 2017 March 2018

by Super User

Milestone 2.1C: Communication and News developed and disseminated

Period: October 2017 – March 2018

-          The JARC General Assembly meeting was performed on October 6th at Milan.

 

Different newsletters, activities and web-site talked about it (please refer to the following table)

 

Annual Meeting of the Spanish Association of Epidemiology

Carmen Navarro presented the communication titled “The Importance of Rare Cancers, the JARC”

Masterclass in rare cancers focus on Sarcomas - 12-13/01/2018 - Athens, Greece

SESSION 5: RARE TUMORS

JARC presentation M. Gazouli

Rare tumors in Europe P. Casali

Rare Cancers K. Apostolidis

Education portal for oncologists

RCE-ESO-ESMO Rare Cancers training course for Patient Advocates

December 2017

Session            UNDERSTANDING IMPORTANT RARE CANCERS INITIATIVES IN EUROPE

Topics Rare Cancers

Presenter         A. Trama, IT

http://oncologypro.esmo.org/Meeting-Resources/RCE-ESO-ESMO-Rare-Cancers-training-course-for-Patient-Advocates-December-2017/The-Joint-Action-on-Rare-Cancers-JARC

ECPC Action Plan 2018

http://www.ecpc.org/ECPC-2018-Action-Plan.pdf

Ministry of Health of the Czech Republic

https://mzcr.cz/Unie/dokumenty/spolecna-akce-%E2%80%9Evzacne-rakoviny-joint-action-on-rare-cancersjarc-_14939_3830_8.html

2nd ESO-ESMO-RCE Clinical Update on Rare Adult Solid Cancers

https://www.e-eso.net/sessions/session_419002.do?methodcall=getSlides&idegrandround=973&download=0&Ticket=

General Assembly

https://www.osservatoriomalattierare.it/european-reference-network-ern/12778-joint-action-sui-tumori-rari-jarc-l-istituto-nazionale-dei-tumori-capofila-europeo

SIOP - 49th Annual Congress of the International Society of Paediatric Oncology (SIOP 2017) 12-15 Oct., 2017 Washington DC (USA)

http://siop2017.kenes.com/

JARC A4 folders disseminated

ITCC Annual Meeting

9-10, November 2017 (FR)

JARC presented on 9 Nov.:
- The Access Project - Gilles Vassal, ITCC and SIOPE

2nd Paediatric Strategy Forum on Medicinal Product Development for Mature B cell Malignancies in Children, 13-14 Nov. 2017, EMA, London (UK)

http://www.ema.europa.eu/ema/index.jsp?curl=pages/news_and_events/events/2017/06/event_detail_001453.jsp&mid=WC0b01ac058004d5c3

JARC A4 folders disseminated

SIOPE quarterly Newsletter: Jan 2018

https://mailchi.mp/f1b6a473a384/siope-newsletter-january-2018

2 articles about the JARC WP 9 Task 9.1

ERN

PaedCan General Assembly and SIOPE Clinical Research Council expert meeting, 1-2 Feb. 2018 Brussels (BE)

http://paedcan.ern-net.eu/wp-content/uploads/sites/11/2018/01/draft-agenda_20170201-02_ern-paedcan-ga-meeting.pdf

JARC A4 folders disseminated

JARC presented on 1 February at SIOPE Clinical Research Council meeting:

- Paediatric Regulation Report & Oncopolicy Updates - Gilles Vassal & Karsten Nysom, SIOPE

JARC presented on 2 February 2018 at ERN PaedCan General Assembly:

- Rare Cancer perspectives for collaborations and JARC activities - Paolo Casali, INT, Gilles Vassal, SIOPE/ Gustave Roussy, Ines Brecht, GPOH

- Epidemiological cancer registries in JARC - Kathy Pritchard-Jones, UCL-ICH
-
JARC WP4 – Epidemiology - Gemma Gatta, INT

SIOPE, ITCC, CDDF 6th ACCELERATE Paediatric Oncology Conference, 8 – 9 Feb 2018, Brussels (BE)

http://www.accelerate-platform.eu/annual-conferences-2/6th-accelerate-paediatric-oncology-conference-2018/

JARC presented on 9 February 2018:
- New challenges in paediatric oncology drug development – Gilles Vassal ACCELERATE/SIOPE/Gustave Roussy, FR

JARC A4 folders disseminated

SIOPE International Childhood Cancer Awareness Day event, 20 Feb 2018, Brussels (BE)

https://www.siope.eu/activities/conferences-and-events/past-events/iccd/

JARC mentioned on the event webpage

JARC A4 folders disseminated

ERNs newsletter

https://ern-euro-nmd.eu/newsletter/newsletter-january-2018/

Cancer and Personalized Medicine Conference Greece

http://cancerconference.boussiasconferences.gr/default.asp?pid=12&la=2&SpeakerId=14

Current and Future Challenges of Innovative

Oncology Drug Development, Austria February 2018

http://cddf.org/files/2017/11/Alpine-Conference-2018-programme-FINAL-VERSION.pdf

Centers of excellence or excellence networks: The surgical challenge and quality issues in rare cancers

European Journal of Surgical Oncology

https://www.sciencedirect.com/science/article/pii/S0748798318301070

XII Jornada Sociosanitaria de Enfermedades Raras en la Comunidad Valenciana and

workshop with scientific Community (I Encuentro Investigadores e Investigadoras Fundación Fisabio

http://fisabio.san.gva.es/enfermedades-raras

Annual Assembly of the Pediatric Oncology Study Leaders of the Society for Paediatric Oncology and Haematology (GPOH), March 1st (DE)

https://www.kinderkrebsinfo.de/aktuelles/termine/index_ger.html?record_id=e184606

JARC presented on 1 March 2018:

- Joint Action on Rare Cancers – Ines Brecht, GPOH

Reminder for the Dissemination materials that are available on our website (jointactionrarecancers.eu)

JARC Poster A3 FolderJARC Poster A3 Folder

JARC Poster A4 FolderJARC Poster A4 Folder

https://www.youtube.com/watch?time_continue=1&v=piZterg7j_c

JARC WPs meetings

WP

Date

Place

Comments

WP7

5-6 February 2018

Athens, Greeece

WP4

14-15 February 2018

Muncia, Spain

WP9

17 November 2017

Frankfurt, Germany

 

Deliverables

The following deliverables (D) were due and submitted on time:

WP

Lead Beneficiary

D number

Title

Submitted

WP3

CSF

D4

JARC first evaluation report

31/10/2017

https://www.jointactionrarecancers.eu/

Milestones

The following milestones (M) were due and submitted on time:

WP

Lead Beneficiary

M number

Title

Submitted

WP5

OECI

32

review of different general evaluation systems and has started to review evaluation system specific for rare cancers.

10/10/2017

WP6

INSERM

39

survey has been completed among EURACAN domain leaders

10/10/2017

WP6

DKG

40

List of criteria to evaluate clinical data

31/1/2018

WP7

WIV-ISP (IPH)

46

Report on status in European countries

10/10/2017

WP7

WIV-ISP (IPH)

48

Report on inventory of regulatory

10/10/2017

WP8

UP

50

collect data on the education and training programs currently available for under- and postgraduates related to the rare cancers, including childhood cancers

6/10/2017

WP9

SIOPE

60

Report on issues raised by care and research of very rare tumours in children and adolescents

6/10/2017

The information on Milestones e Deliverables are accessible to all associated partners accessing the Research and Innovation portal (http://ec.europa.eu/research/participants/portal/desktop/en/home.html),

- log in to the Participant Portal

- select "my project"

- press “MP “ (Manage Project) in the JARC section project

- select “Continuous reporting”

- press milestones or deliverables