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DISSEMINATION STRATEGY AND COMMUNICATION PLAN
ACHIEVING COMPREHENSIVE COORDINATION ON ORGAN
DONATION THROUGHOUT THE EU
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CONTENTS
1. INTRODUCTION ......................................................................................... 3
2. DISSEMINATION OBJECTIVES AND CONTENTS ...................................... 3
3. TARGET GROUPS ........................................................................................ 5
4. DISSEMINATION TOOLS ............................................................................. 6
a. Layman’s brochure ......................................................................................................... 6
b. Web dissemination ......................................................................................................... 7
c. Newsletters ...................................................................................................................... 7
d. Use of social public media ............................................................................................ 7
5. TIMELINE .................................................................................................... 10
ANNEX I. List of stakeholders ....................................................................... 11
ANNEX II. Template list of international/national congresses where
ACCORD can be disseminated ..................................................................... 25
Annex III. Policy for authorship of publications .......................................... 28
Annex IV. Evaluation of dissemination activities in progress .................... 30
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1. INTRODUCTION
The dissemination plan described below represents the strategy for the ACCORD
consortium use to communicate the outcomes of the project both during its lifetime and
at the end of its 42 months duration.
Based on previous experiences of the Work Package (WP) 2 leaders, a dual approach
is proposed. On one hand, a continuous update on the project findings and outputs
must be provided to all relevant stakeholders, involving them as much as possible in
the development of the activities as these progresses. On the other hand, some
dissemination efforts will be required after the project lifetime expiration, as major
findings and conclusive deliverables normally come in the end.
As a complementary action to the dissemination strategy, a sustainability and
implementation plan per each country to ensure the sustainability and transferability of
the Joint Action (JA) results will be also drafted, with the contribution of each
associated partner.
It is therefore worthwhile underlining that, in addition to WP2 leader and the consortium
coordinator, each partner is responsible for the dissemination of the JA at its own
country, by attending local and national conferences in order to present the project and
its results to experts in the field and by communicating the findings to the
corresponding Competent Authority and policy makers. This last involvement is also
granted by the nature of the JA itself, since partners have been identified by Member
States authorities. The aforementioned national activities are requested to be notified
to the WP2 leader - and the coordinator of the JA - so that a complete record of
national project dissemination activities can be constructed.
Dissemination will be also managed internationally, via the website (managed by the
coordinator of the JA), through the invitation of the External Advisory Board - made of
international experienced members (Francis L. Delmonico, Peter Doyle and Philippe
Morel)- to general meetings and specific teleconferences, the attendance of ACCORD
partners to international conferences and a wide distribution of the project materials, as
specified in this plan.
The present dissemination plan includes a description of the contents to disseminate,
the target groups and the tools to use for the different target groups.
2. DISSEMINATION OBJECTIVES AND CONTENTS
It is the intention of the ACCORD consortium to guarantee a proper visibility of the
findings of the three different fields covered by the JA: living donor registries,
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collaboration between Intensive Care Units and donor transplant coordinators, and
twinnings in the area of organ donation and transplantation. Clearly, only the key
outputs will be extensively disseminated via specific tools that will be designed for such
purpose. Dissemination activities will therefore focus on the following outputs:
Living donor registries:
o State of the art of living donor registries
o Definition of a minimum and expanded data set for live donor
registries
o Recommendations for the development of a national live donor
registry and for setting up a European Union (EU) registry of national
live donor registries
Intensive Care Units and Donor Transplant Coordinators collaboration:
o Study of the variations in end-of-life care pathways for patients with a
devastating brain injury in Europe
o Recommendations for systemic improvements in end-of-life care
pathways to promote organ donation
Twinning projects: France-Bulgaria (organization of the procurement system,
evaluation of activities, training surgical team for pediatric kidney
transplantation), Italy-Czech Republic/ Cyprus/Lithuania/ Malta, Netherlands-
Hungary. (Evaluation, Accreditation and Audit of Transplant Centers):
o Report on experiences with Twinning projects
o Guidelines/ twinning model for futures initiatives in the field
During, and particularly towards the end of the JA, promotional material will be
produced to highlight the main findings of the project, such as scheduled newsletters
and a final report, out of which WP2 will produce a layman version. This will be
particularly relevant to EU Member States who are not partners of the JA, such as
Austria, Slovak Republic and Denmark. The Competent Authorities for organs of such
countries will receive as well copies of the dissemination material that will be produced.
This approach will be implemented in close collaboration with the JA coordinator.
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3. TARGET GROUPS
Having identified the dissemination contents, the next priority is the identification of the
groups of users. Several different target groups can be selected:
European Commission DGs (SANCO, RESEARCH, other)
European Parliament
European Council
World Health Organization (WHO)
Council of Europe (EDQM)
National Competent Authorities and their delegated bodies, if applicable
National Transplant Organizations (if not represented above)
Supranational organ exchange organizations (Eurotransplant,
Scandiatransplant)
National and international scientific societies in the field of donation,
transplantation and intensive/emergency care
International registries managers, when relevant to the JA
In-the-field professionals (intensivists, surgeons, nephrologists, coordinators)
Patient associations
General public.
As WP2 leader, CNT-ISS has produced a list proposal and all consortium partners will
contribute in building and updating such list of stakeholders based on the
aforementioned categories. The list includes links to single websites and email
addresses for direct contact, normally referring to the corresponding general secretariat
or, if necessary, individual contact persons. The template list of stakeholders divided by
groups is attached as Annex I. This list will be regularly updated and will be part, in its
final version, of the sustainability and implementation plan.
Given the relevance of this JA in the organ transplantation field, it has been decided to
involve as many stakeholders, interest groups and experts as possible. This will be
done in a number of ways, such as by:
Updating all interested parties on the project’s progress through different means
as specified here after;
Presenting the project objectives and the major results obtained so far at several
international meetings of regulators, scientific societies and of other European
projects.
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Dissemination activities aiming at the general public will also be designed and carried
out from the onset of the JA. Given the nature of ACCORD, the information to be
shared with the general public will be considerably different as to what will be provided
to in-the-field professional operators. Tools identified for the general public target group
will be mainly the website, the layman brochure and the layman version of the final
report. In order to curb costs, both brochure and report for the general public will be
produced in a limited number of paper copies but also in electronic version, unloadable
on the JA website, national websites and possibly disseminated through the other
identified tools. For press conferences organized at any event, the special
dissemination needs of the general public will be given due consideration. Finally, a link
with international organizations, such as the WHO and the Council of Europe - EDQM
will also be established to ensure that the results of the project are made available to
countries outside the European Union.
4. DISSEMINATION TOOLS
a. Layman’s brochure
Addressees to all target groups.
In line with the requirements for JAs funded by the Public Health Programme,
the ACCORD consortium will produce a “layman brochure” addressed to all the
target groups, including the general public at the beginning of the action. This
dissemination material is meant to include a general description of the project
goals, aimed at informing the public of the project existence and the planned
activities and at drawing attention on the implementation of such action.
CNT as WP2 leader will propose a draft brochure that will be first agreed upon
with the project coordinator (ONT) and then circulated within the consortium for
comments and approval. One thousand copies will be printed and the brochure
will be published as downloadable electronic file in the public part of the
website. Each associated and collaborating partner will receive a certain
number of copies to ensure dissemination in all participating countries. While no
budget was allocated in the agreement for paying for dissemination booths or
for travel to congresses, in its function of WP2 leader, CNT will distribute the
brochure during some selected international events, first of all at the Competent
Authorities meetings organized by the European Commission.
In the brochure, all the associated and collaborating partner organizations will
be listed. A short description of the project and its main goals will open the
document. In a second part, the specific objectives of the project will be
analyzed more in depth: living donor registries, collaboration between intensive
care and donor transplant coordinators, and twinnings on organ donation and
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transplantation. All the rules about publicity statements foreseen in the contract
will be honored.
For the final dissemination event, planned to be held in April 2015 in Madrid, it
is also envisaged to produce a short info leaflet, addressed to the general public
and the media.
Still for this same event the layman version of the final report will be produced
at month 36, in the form of a more comprehensive information brochure with a
full overview of the project outcomes and results. Such layman report will also
be uploaded in electronic form in the public part of website and printed in 1.000
copies.
b. Web dissemination
Addressees to all target groups.
CNT will cooperate with ONT in updating the public area of the ACCORD website.
General information will be agreed upon by a small editorial group, composed by
the project leader and the dissemination WP2 leader. ONT will manage practically
the uploading of materials on the website such as publications or events (inputs
from all partners will be required). Specific information on the core WPs will be
provided by each core WP leader.
Final reports foreseen by the JA will be distributed to target audiences (Project
Committee, Collaborating Partners, EAHC and target groups) as foreseen in the
Technical Annex (p. 39 of Grant Agreement). The opportunity of uploading
information on all public events and public deliverables on EAHC website giving
communication to [email protected] will also be fully exploited.
c. Newsletters
Addressees to competent authorities, scientific societies and professionals.
CNT will prepare two newsletters to be disseminated among stakeholders. These
newsletters will be produced at months 18 and 32, in 400 copies plus e-version.
Electronic files will be sent out by email to the list of relevant stakeholders.
d. Use of social public media
Addressees to all target groups.
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In order to increase the dissemination opportunities, the ACCORD consortium will
take advantage of the available public spaces. Since it is often the case that it is
difficult for the coordinator to keep on maintaining a dedicated website after the
expiration of projects or actions, public tools such as wiki pages are planned to be
used. A wiki page on the ACCORD JA will therefore be written and uploaded, and
inserted in Wikipedia in English. This will allow having permanent trace of the JA
main outcomes. ACCORD partners will also have the opportunity to translate the
page and publish it in their native language Wiki pages, if willing to do so.
Moreover, if some video materials become available for dissemination or
educational purposes during the JA, uploading on website or other public space will
be considered.
a. International congresses – oral presentations and/or organization of aimed
initiatives (addressees: SCIENTIFIC SOCIETIES, PROFESSIONALS)
List of events and international congresses where dissemination actions can be
taken will be produced in agreement with the consortium- see template in Annex II.
Each country will be asked to provide a list of National Congresses or events where
they plan to disseminate nationally the results of the JA in 2013, 2014 and 2015.
Such information will be asked at the beginning of the JA and again in early 2014
and 2015. The final version of such list will be part of the sustainability and
implementation plan.
As far as for oral and poster communications are concerned, upon initiative of the
coordinator or WP leaders and with the consent of the consortium majority,
abstracts will be submitted to relevant congresses or events.
b. Preparation of presentations for official EU meetings (addressees:
COMPETENT AUTHORITIES, POLICY MAKERS).
When requested to give presentations on ACCORD during official EU meetings,
such as EAHC workshops, EU Commission Organ Competent Authorities meetings
Council of Europe CD-P-TO meetings or, EU Parliament events, the consortium will
support DG SANCO or the organization in charge of delivering the presentation
during the meeting in preparing an update on the results of the JA. To this end, a
standard updatable presentation will be prepared as basis for these presentations
and each WP leader will be asked to provide the requested information. All
presentations will be uploaded as pdf in the private section of the ACCORD
website.
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c. Papers for international and national scientific and professional journals
(addressees: PROFESSIONALS)
During the lifetime of the JA, the consortium or each single partner is invited to write
and submit for publication articles that summarize the outputs of the JA. All such
articles shall follow the EAHC publicity rules as foreseen in Article I.11.3 and II.5.1
of the Grant Agreement and some internal rules as reported in Annex III.
d. Press releases (addressees: JOURNALISTS and MASS MEDIA)
Press releases related to the work of the JA will be prepared in agreement with
ONT and assistance will be supplied upon request to consortium members when
needed.
e. Sustainability and implementation plan (addressees: DG SANCO, EAHC)
As foreseen by the technical Annex to the Grant Agreement, a sustainability and
implementation plan of dissemination initiatives will be delivered at month 34.
Contributions from all associated partners will be collected to this purpose and the
final version of stakeholders and events lists will be part of this. The drafting of this
document will start at month 30. This deliverable will also contain a summary of the
dissemination initiatives taken by the consortium during the JA lifetime. To this
purpose and for the sake of the evaluation of ACCORD, a form for keeping due
record of participation to events or other dissemination initiatives has been
prepared by WP3 coordinator and will be used to monitor the progress of
dissemination activities as part of the Evaluation WP (Annex IV).
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5. TIMELINE
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ANNEX I. List of stakeholders
Nº COUNTRY ORGANIZATION ABREVIATION/E-MAIL WEBSITE
1 SPAIN
Organización Nacional de Trasplantes ONT
www.ont.es
Beatriz Domínguez-Gil [email protected]
Rosario Marazuela [email protected]
Lola Perojo [email protected]
Cristina Vázquez de Prada [email protected]
2 ITALIA
Centro Nazionali Trapianti ISS-CNT
www.trapianti.salute.gov.it Alessandro Nanni Costa [email protected]
Paola di Ciaccio [email protected]
3 NETHERLANDS
Nederlandse Transplantatie Stichting (Dutch Transplantation Foundation)
DTF
www.transplantatiestichting.nl
Bernadette Haase [email protected]
Andries Hoitsma [email protected]
Cynthia Konijn [email protected]
Loes van Ingen Schenau [email protected]
Mike van den Bosch [email protected]
Jeannette de Graauw [email protected]
Nichon Jansen [email protected]
Kirsten Ooms-de Vries [email protected]
Jeanet Warmerdam [email protected]
4 UK
Department of Health - Organ and Tissue Transplantation – NHS
NHSBT
www.nhsbt.nhs.uk
Mark Roberts [email protected]
Chris Rudge [email protected]
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Paul Murphy [email protected]
Claire Williment [email protected]
Karen Quinn [email protected]
5 FRANCE
Agence de la biomédecine ABM www.agence-biomedecine.fr
Candide Font-Sala [email protected]
Arnaud De Guerra [email protected]
6 BULGARIA
Bulgarian Executive Transplant Agency BEAT
www.mh.government.bg
Silvi Kirilov [email protected]
Dimitar Pehlivanov [email protected];
Maria Gicheva [email protected]
Delilah Mihaylova [email protected]
7 CROATIA
Ministry of Health Republic of Croatia/ Institute for Transplantation and Biomedicine
MOH
www.zdravlje.hr
Mirela Busic [email protected]
Branka Malnar-Grubisic [email protected]
8 CYPRUS
Ministry of Health
www.moh.gov.cy
Panayiotis Hadjicostas [email protected];
9 CZECH REPUBLIC
Czech Transplantation Coordination Center
KST
www.kst.cz Pavel Březovský [email protected]
Premysl Fryda [email protected]
10 ESTONIA
Permanent Representation of Estonia to the EU / Tartu University Hospital
TUH
www.kliinikum.ee/eng
Virge Pall [email protected]
Peeter Dmitriev [email protected]
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Mart Einasto [email protected]
11 GERMANY
DEUTSCHE STIFTUNG ORGANTRANSPLANTATION
DSO
www.dso.de Guenter Kirste [email protected]
Thomas Breidenbach [email protected]
Detlef Bösebeck [email protected]
12 GREECE
Hellenic Transplant Organisation HTO
www.eom.gr Georgia Menoudakou [email protected]
Efi Nikolaou [email protected]
13 HUNGARY
Hungarian National Blood Transfusion Service, Hungarian Transplantation Society
HNBTS
www.ovsz.hu/en
Sándor Mihály [email protected]
Orsolya Deme [email protected]
14 IRELAND
Health Service Executive HSE
www.hse.ie/eng
Matthew Collins [email protected]
Siobhan O'Sullivan Siobhan_O'[email protected]
Maeve Raeside [email protected]
Mary Jackson [email protected]
15 LATVIA
Pauls Stradins Clinical University Hospital
www.stradini.lv
Liga Grudule [email protected]
Silvija Pablaka [email protected]
Eva Steina [email protected]
Rafail Rozental [email protected]
16 LITHUANIA
National Transplant Bureau NTB
www.transplantacija.lt Asta Kubilienė asta.kubilienė@transplantacija.lt
Audronė Būziuvienė [email protected]
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17 MALTA
DG Health Care Services within the Ministry for Health, the Elderly and Community Care
MHEC
https://ehealth.gov.mt/HealthPortal Carmel Abela [email protected]
Paul Calleja [email protected]
Joseph Zarb Adami [email protected]
18 NORWAY
The Norwegian Directorate of Health HDIR
www.regjeringen.no
Per Fauchald [email protected]
Jorunn Svendsen [email protected]
19 POLAND
Poltransplant POLTRANSPLANT
www.poltransplant.org.pl
Jaroslaw Czerwiński [email protected];
20 PORTUGAL
Instituto Português do Sangue e da Transplantação
ISPT
www.asst.min-saude.pt
Catarina Bolotinha [email protected];
21 ROMANIA
National Transplant Agency ANT
www.romtransplant.ro
Dan Adrian Luscalov [email protected]
Victor Zota [email protected];
Rosana Turcu [email protected]
22 SLOVENIA
SLOVENIJA TRANSPLANT SLOVENIJA TRANSPLANT
www.slovenija-transplant.si Danica Avsec [email protected]
Lea Lampret [email protected]
23 SWEDEN National Board of Health and Welfare SoS
www.socialstyrelsen.se/english
Charlotte Möller [email protected]
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Nº COLLABORATING PARTNERS
CONTACT PERSON E-MAIL
1 EUROPEAN HOSPITAL AND HEALTHCARE FEDERATION (HOPE)
Pascal Garel [email protected] www.hope.be
2 EUROPEAN SOCIETY OF INTENSIVE CARE MEDICINE (ESICM)
Giuseppe Citerio [email protected] www.esicm.org
Paulo Maia [email protected]
3 EUROTRANSPLANT Axel Rahmel [email protected] www.eurotransplant.org
Marieke van Meel [email protected]
4 SCANDIATRANSPLANT Niels Grunnet [email protected] www.scandiatransplant.org
5
European Transplant Coordinators Organizations-European Donation Committee (ETCO-EDC) a section of ESOT
Teresa Pont [email protected] www.etco.org
6 WORLD HEALTH ORGANISATION Luc Nöel [email protected] www.who.org
7
EUROPEAN DIRECTORATE FOR THE QUALITY OF MEDICINES AND HEALTH CARE - COUNCIL OF EUROPE
Marta López Fraga [email protected]
www.edqm.eu Karl-Heinz Buchheit [email protected]
8 HOSPITAL CLÍNIC DE BARCELONA - SPAIN Martí Manyalich [email protected] www.hospitalclinic.org
9 ORGANISATION DES ETABLISSEMENTS DE SOINS - BELGIUM
Isabelle Van Der Brempt [email protected]
ov.be http://www.health.belgium.be/eportal/Aboutus/ourorganisation/DGforHealthCare
FacilitiesOrgan/?fodnlang=fr Isabelle Senepart [email protected]
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Nº EU CAs (not involved in ACCORD)
CONTACT PERSON E-MAIL
1 Bundesministerium für Gesundheit – Federal Ministry of Health - Austria Bernhard Fattinger [email protected] www.gesundheitsministerium.at
2
Transplantacne addolenie Fakultna nemocnica - Department of transplantation University Hospital – Republic of Slovakia
Luboslav Bena [email protected] www.azet.sk
3 Sundhedsstyrelsen - Danish Health and Medicines Authority Bjorn Ursin Knudsen [email protected] www.laegemiddelstyrelsen.dk
SCIENTIFIC SOCIETIES WEB CONTACT PERSON E-MAIL
AUSTRIAN TRANSPLANTATION SOCIETY www.austrotransplant.at Rainer Oberbauer [email protected]
ÖSTERREICHISCHE GESELLSCHAFT FÜR NEPHROLOGIE http://www.nephro.at
DEUTSCHE TRANSPLANTATIONSGESELLSCHAFT www.d-t-g-online.de
BELGISCHE TRANSPLANTATIE VERENIGING www.transplant.be
NEDERLANDSE TRANSPLANTATIE VERENINGING (NTV) www.transplantatievereniging.nl
DANISH TRANSPLANTATION SOCIETY www.organtransplantatation.dk [email protected];
BRITISH TRANSPLANTATION SOCIETY (BTS) www.bts.org.uk
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SOCIETA ITALIANA TRAPIANTI DI ORGANO (SITO) www.societaitalianatrapiantidiorgano.com
EURO LIVER FOUNDATION www.transplantations.com [email protected]
SOCIETA' ITALIANA DI NEFROLOGIA (SIN) www.sin-italy.org
SOCIEDADE PORTUGUESA DE TRANSPLANTAÇÃO (SPT) www.spt.pt
AMERICAN SOCIETY OF TRANSPLANTATION (AST) www.a-s-t.org
INTERNATIONAL SOCIETY FOR HEART AND LUNG TRANSPLANTATION (ISHLT)
www.ishlt.org
INTERNATIONAL TRANSPLANT COORDINATORS SOCIETY (ITCS) http://med.kuleuven.be/itcs/home.html
[email protected]; [email protected]
INTERNATIONAL SOCIETY OF NEPHROLOGY (ISN) http://www.nature.com/isn/index.html
SOCIEDAD LATINO AMERICANA Y DEL CARIBE DE TRASPLANTE (STALYC) www.congreso.sociedaddetrasplante.cl
THE MIDDLE EAST SOCIETY FOR ORGAN TRANSPLANTATION www.mesot-tx.org
[email protected]; [email protected]
THE TRANSPLANTATION SOCIETY (TTS) www.transplantation-soc.org
THE TRANSPLANTATION SOCIETY OF AUSTRALIA AND NEW ZEALAND www.tsanz.com.au
CANADIAN SOCIETY OF TRANSPLANTATION www.cst-transplant.ca
THE JAPAN SOCIETY FOR TRANSPLANTATION www.asas.or.jp/jst
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THE MALAYSIAN TRANSPLANTATION SOCIETY www.mst.org.my/main.html
SOCIEDAD ESPAÑOLA DE TRASPLANTE www.setrasplante.org Manuel Arias Rodríguez [email protected]
SOCIEDAD ESPAÑOLA DE CARDIOLOGÍA www.secardiologia.es Carlos Macaya Miguel [email protected]
SOCIEDAD ESPAÑOLA DE NEFROLOGÍA www.senefro.org Alberto Martínez Castelao [email protected]
SOCIEDAD ESPAÑOLA DE NEUMOLOGÍA Y CIRUGÍA TORÁCICA www.separ.es Angel Salvatierra [email protected]
SOCIEDAD ESPAÑOLA DE MEDICINA INTENSIVA, CRÍTICA Y UNIDADES CORONARIAS
www.semicyuc.org José Cuñat de la Hoz
SOCIEDAD ESPAÑOLA DE MEDICINA DE URGENCIAS Y EMERGENCIAS www.semes.org Tomás Toranzo Cepeda [email protected]
SOCIEDAD ESPAÑOLA DE TRASPLANTE HEPÁTICO www.sethepatico.org Manuel de la Mata García
SOCIEDAD ANDALUZA DE TRASPLANTES www.satot.org
Dolores Burgos
Rodríguez [email protected]
SOCIETAT CATALANA DE TRASPLANTAMENT www.fctransplant.org
Josep Mª Campistol i
Plana [email protected]
SOCIEDAD MADRILEÑA DE TRASPLANTES www.smtrasplantes.org
José María Morales
Cerdán [email protected]
SOCIEDAD ESPAÑOLA DE NEFROLOGIA www.senefro.org
SOCIEDADE PORTUGUESA DE CUIDADOS INTENSIVOS www.spci.pt Paul Maia [email protected]
SOCIEDADE PORTUGUESA DE www.spt.pt Fernando Macário [email protected]
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TRANSPLANTAÇÃO [email protected]
TURKISH TRANSPLANTATION SOCIETY www.tond.org.tr
INTERNATIONAL PAEDIATRIC TRANSPLANT ASSOCIATION www.iptaonline.org [email protected]
INTERNATIONAL LIVER TRANSPLANTATION SOCIETY www.ilts.org
HUNGARIAN TRANSPLANTATION SOCIETY www.transzplant.hu
SOCIETE FRANÇAISE DE NEPHROLOGIE www.soc-nephrologie.org Maurice Laville [email protected]
SOCIETE FRANÇAISE D'ANESTHESIE ET DE REANIMATION www.sfar.org/t/ [email protected]
SOCIETE FRANCOPHONE DE TRANSPLANTATION www.transplantation-francophone.org/
ACADEMIE NATIONALE DE CHIRURGIE http://www.bium.univ-paris5.fr/acad-chirurgie/ [email protected]
SOCIETE FRANCOPHONE DU DIABETE http://www.sfdiabete.org/ [email protected]
ASSOCIATION FRANÇAISE D'UROLOGIE http://www.urofrance.org/ [email protected]
ASSOCIATION FRANÇAISE POUR L'ETUDE DU FOIE http://www.afef.asso.fr/ [email protected]
SOCIETE FRANÇAISE DE CHIRURGIE THORACIQUE ET CARDIO-VASCULAIRE
http://www.sfctcv.net [email protected]
SOCIETE DE PNEUMOLOGIE DE LANGUE FRANÇAISE http://www.splf.org/ [email protected]
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SOCIETE DE REANIMATION DE LANGUE FRANÇAISE http://www.srlf.org/ Djillali Annane
[email protected]; [email protected]
SOCIETE FRANÇAISE DE CARDIOLOGIE http://www.sfcardio.fr [email protected]
ASSOCIATION FRANCOPHONE DES INFIRMIERS DE DIALYSE ET TRANSPLANTATION EN NEPHROLOGIE
http://www.afidtn.com [email protected]
ASSOCIATION DE CHIRURGIE HEPATO-BILIAIRE ET DE TRANSPLANTATION HEPATIQUE
http://www.chirurgie-viscerale.org Denis Castaing [email protected]
SOCIETE FRANÇAISE DE CHIRURGIE DIGESTIVE http://www.chirurgie-viscerale.org Loïc de Calan [email protected]
SOCIETE FRANÇAISE DE CHIRURGIE PEDIATRIQUE http://www.chirpediatric.fr
http://www.chirpediatric.fr/formulairecontact.html
SOCIETE DE NEPHROLOGIE PEDIATRIQUE http://www.soc-nephrologie.org Patrick Niaudet [email protected]
SOCIETE FRANÇAISE DE MEDECINE D'URGENCE (SFMU) www.sfmu.org Denis Baron [email protected]
ASSOCIATION DES MEDECINS URGENTISTES DE FRANCE (AMUF) www.amuf.fr
EUROPEAN DIALYSIS & TRANSPLANTATION ASSOCIATION/EUROPEAN RENAL ASSOCIATION (EDTA/ERA)
http://www.era-edta.org
EUROPEAN LIVER TRANSPLANT REGISTRY www.eltr.org Renè Adam [email protected]
COLLABORATIVE TRANSPLANT STUDY www.ctstransplant.org Gerard Opelz [email protected]
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LATVIJAS TRANSPLANTACIJAS CENTRS LATVIAN TRANSPLANTATION CENTER
LATVIJAS TRANSPLANTOLOGU ASOCIACIJA ASSOCIATION OF TRANSPLANTOLOGIST IN LATVIA
Jānis Jušinskis
Jānis Bicāns [email protected]
SABIEDRISKA BEZPELNAS ORGANIZACIJA BALTTRANSPLANT ASSOCIATION BALTTRANSPLANT
Sergey Trushkov [email protected]
PATIENT ASSOCIATIONS WEB CONTACT PERSON E-MAIL
Bulgarian Liver Transplanted Association
Danish Kidney Transplantation www.nyreforeningen.dk
Irish Heart and Lung Transplant Association www.ihlta.com
Irish Kidney Association - Dublin www.ika.ie
ACTI - Associazione CardioTrapiantati Italiani www.acti-italia.it
AITF - Associazione Italiana Trapiantati di Fegato www.aitf.org [email protected]
ANED - Associazione Nazionale EmoDializzati www.aned-onlus.it [email protected]
LIVER-POOL - Federazione nazionale associazioni di volontariato malattie epatiche e trapianto
www.liver-pool.org [email protected]
Norwegian Organ Donation Foundation www.organdonasjon.no Hege Lundin Kuhle [email protected]
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Norwegian Association for Kidney and Transplant Patients www.lnt.no Kolbjørn Breivik [email protected]
Norwegian Association for Heart and Lung Transplant Patients Øivind Iversen [email protected]
The Swedish Association for Kidney Patients www.drustvo-transplant.si [email protected]
European Dialysis and Transplantation Nurses Association (EDTNA/ERCA) www.edtnaerca.org [email protected]
Welsh Kidney Patients' Association UK www.wkpa.org.uk
European Heart and Lung Transplant Federation (EHLTF) www.ehltf.info
[email protected]; [email protected]
Fédération Nationale d’Aide aux Insuffisants Rénaux www.fnair.asso.fr
[email protected] [email protected]
Fondation Greffe de vie www.greffedevie.fr [email protected]
France Adot www.france-adot.org/ [email protected]
Association des Greffés du Cœur et des Poumons du Sud-Ouest (A.G.C.P.S.O) http://agcpso.fr/ Dominique Hermoso [email protected]
Association départementale pour le don d’organes et de tissus humains (ADDOTH)
http://www.addoth.com/ [email protected]
Association Française de Malades et Opérés Cardio-vasculaires (AFDOC nationale)
www.asso-afdoc.fr/ [email protected]
Association de Lutte contre l’Insuffisance Rénale Chronique et pour la promotion du Don d’Organes en Corse (AIRCDOC)
http://rene.sialelli.perso.neuf.fr/index.html [email protected]
Coordination des Associations Militant pour la Greffe et le don d'Organes en
amigo-bretagne.org/ [email protected]
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Bretagne (AMIGO Bretagne)
Association Marine "dons d'organes dons de vies" www.marine-dons-organes.org/ Dominique Jacquot [email protected]
Association Morgan - Vivre grâce à la greffe www.associationmorgan.com/ [email protected]
Coordination des transplantés d'Alsace-Lorraine (COTRAL) http://www.cotral.org/sommaire.htm [email protected]
Comité des Transplantés de Lorraine (COTRALOR) Alain Walter [email protected]
Donneurs de vie www.donneursdevie.fr/
Jean-Pierre Leroux [email protected]
Fédération Française des Associations des Greffés du Cœur et des Poumons (FFAGCP)
www.france-coeur-poumon.asso.fr/ [email protected]
Les transplantés sportifs des Olonnes " REVIVRE par le sport " Jean-Claude Le Bourhis [email protected]
Maryse ! pour la vie www.maryse-pourlavie.com/ [email protected]
Renaloo www.renaloo.com/
http://www.renaloo.com/contactpage
TRANS-FORME (Association Fédérative Française des Sportifs Transplantés et Dialysés)
www.trans-forme.org/ Claude Barres [email protected]
Transhepate - Association des déficients et transplantés hépatiques
http://www.transhepate.org/wordpress/
André Le Tutour [email protected]
Dutch Kidney Foundation www.nierstichting.nl
Dutch Kidney Patient Association www.nvn.nl/
Coalition for Health www.koaliceprozdravi.cz Jana Petrenko [email protected]
Latvijas Nieru slimnieku asociācija [email protected]
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Latvian Association of Kidney Patients
ASOCIACION ESPAÑOLA DE TRASPLANTADOS
www.somospacientes.com/asociacion-espanola-de-trasplantados/
Juan Pedro Baños [email protected]
FEDERACIÓN NACIONAL DE ENFERMOS Y TRASPLANTADOS HEPÁTICOS - FNETH
www.fneth.org/ Antonio Bernal Jiménez [email protected]
FEDERACION ESPAÑOLA DE TRASPLANTADOS DE CORAZON Y PULMÓN- FETCO
www.fetco.es/web/ Emilio Bautista Soto [email protected]
FEDERACIÓN NACIONAL DE ASOCIACIONES PARA LA LUCHA CONTRA LAS ENFERMEDADES DEL RIÑÓN - ALCER
www.alcer.org/es/ Alejandro Toledo
Noguera [email protected]
ASOCIACIÓN DE TRASPLANTADOS DE PÁNCREAS – ATP http://atp-pancreas.blogspot.com.es/
Alejandro Toledo
Noguera [email protected]
Croatian Transplant Association www.transplant.hr Tanja Watz [email protected]
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ANNEX II. Template list of international/national congresses where ACCORD can be disseminated
INTERNATIONAL CONGRESSES 2012 2013 2014 Eurotransplant Meeting Leiden, NL, October 11-12 Leiden, NL, October 10-
11
Leiden, NL, October ?
Eurotransplant Winter Meeting
Alpbach, A, January 23-
25
Alpbach, A, January
ELPAT meeting Rotterdam, April 20-23 ISHLT annual meeting 33
rd, Montreal, April 24-27 34
th San Diego, USA, 9 –
12 April ETCO ESOT Vienna, A, 8-11
September
IPITA congress Monterey, USA, Sept 25-27
ERA-EDTA Istanbul, TR, 18-21 May ?, ? May European Society of Intensive Care Medicine
Paris, Oct 5-9
European Donation Day October October ISDOP Organ donation congress Sydney, Nov 21-24
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COUTRY NATIONAL CONGRESSES 2012 2013 2014
SPAIN
XLII Congreso Nacional de la Sociedad Española de Nefrología
Maspalomas, Gran Canaria, Oct 6-12
LIV Reunión Nacional de la SETH-XXVIII Congreso Nacional de la SETH
Salamanca, Oct 18- 20
SEC 2012 - Congreso de la Sociedad Española de Cardiología 2012
Sevilla, Oct 18- 20
12 Congreso Sociedad Catalana de Trasplantament
Barcelona, March 13-15
SETH 2013 – Sociedad Española de Trasplante Hepático
Córdoba, Oct 2-4
ITALY
SISQT - Italian Society for Safety and Quality in organ Transplantation
4th congress - May
SIIARTI - Italian Intensive Care Society Naples, Oct 24-27 67
th national congress ,
October
SIN - Italian Society of Nephrology Milan, Oct 3-6 53rd congress – Milan, 3-6 October
SITO (Italian Society for organ transplantation)
Turin, Oct 18-20 37th congress - October
NETHERLANDS NTV – Dutch Transplant Society 25
th congress - Nijmegen
March 13-14 26
th congress – Leiden
March UK
FRANCE
National days of MDs, Coordinators and Nurses
22-23 November
12th Congress of the Francophone Society for Transplantation
12-15 December
Francophone Society of Intensivists
16-18 January, Paris
Days of the Agence de la biomédecine 30-31 of May, Paris Days of Transplantation Paris
BULGARIA CROATIA CYPRUS
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CZECH REPUBLIC
Czech Transplant Society and Slovak Transplant Society
4th Joint Czecho-Slovak Transplant Congress, Donovaly, SK, Sept 13-15
ESTONIA GERMANY GREECE
HUNGARY Hungarian Transplant Society XV Congress - November
IRELAND
LATVIA
LITHUANIA
European donation day October October October World donation day November November November Conference of nephrologists and patient organization
- March March
MALTA
NORWAY National Meeting for Organ Donation Responsible Doctors and Nurses
March, Oslo
POLAND PORTUGAL ROMANIA SLOVENIA SWEDEN
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Annex III. Policy for authorship of publications
The group should be willing to produce some publications with the both scientific or
non-scientific findings of the project. Without prejudice to the Article I.11.31 and II.5.12
of the Grant Agreement all the consortium should also apply some internal rules.
When the action is generating “foreground” (i.e. results, including information, materials
and knowledge generated in the action), such foreground is owned by the participant
generating it. When foreground is generated jointly, it will be jointly owned. Therefore if
a publication arises from action foreground, the following procedure for including
authors will be applied:
I. In case of national or international publications, at least one person per partner
organization involved in the WP that produced the paper should be mentioned
as an author; it is up to the partner organization to indicate its authors;
II. In case of local publications, such as short article published on an annual report,
newspaper of patient’s associations, presentations in national conferences or
any announcement written in sections devoted to the dissemination of
international projects on the national website, , the partner in charge of the
dissemination activity will appear as author, signing on behalf of the consortium.
The project can be mentioned at national and international level through presentations,
posters, and other useful means:
I. If one partner would like to produce one article or presentation fully dedicated to
the project, this should be agreed in advance by the consortium;
II. If a simple mention of the project within other contents is foreseen, there will be
no need of agreement beforehand.
If requested, an editorial group will be set up for the submission of papers. The article
shall be however approved by the consortium.
In any case the Italian National Transplant Center as leader of the dissemination work-
package shall be always informed of any dissemination activity of the project at
1 ARTICLE I.11.3 - Without prejudice to the Article II.5.1, unless the Executive Agency requests or agrees
otherwise, all communications or publications by the beneficiaries collectively or one of the beneficiary individually, which are related to the action, including conferences, seminars, videos, electronic communications or printed matter shall include the following statement: “This [insert appropriate description, e.g. publication, conference, etc.] arises from the project [insert project title] which has received funding from the European Union, in the framework of the Health Programme.”
2 ARTICLE II.5.1 – Unless the Executive Agency requests otherwise, any communication or publication by
the beneficiaries collectively or any one of the beneficiaries individually about the action, including at a conference or seminar, shall indicate that the action has received funding from the Union. Any communication or publication by the beneficiaries collectively or any one of the beneficiaries individually, in any form and medium, shall indicate that the sole responsibility lies with the author and that the Executive Agency is not responsible for any use that may be made of the information contained therein.
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national or international level, so that each initiative could be traced and receive the
right visibility as well. For this purpose CNT shall always receive a copy of the paper for
the Joint Action records. The same applies to ONT as coordinator of ACCORD.
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Annex IV. Evaluation of dissemination activities in progress
Template for collecting information on the communication and dissemination activities developed by JA partners
Partner/Organisation:………………………………………………………………………………………………………………………………………………
Country: …………………………………………City……………………………………………………………………………………………………………...
Table 1: Activities performed for the dissemination of the knowledge acquired in ACCORD JA
Actual
Dates
Type of Communication action: (institutional/academic contact, scientific paper
or poster, scientific congress, workshops, web sites, conferences, seminars,
information sent by email, press, tv, radio, leaflet, Facebook, twitter, etc…)
Type of
audience
Countries
addressed
Size of
audience
Partner
responsible
/involved
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Actual
Dates
Type of Communication action: (institutional/academic contact, scientific paper
or poster, scientific congress, workshops, web sites, conferences, seminars,
information sent by email, press, tv, radio, leaflet, Facebook, twitter, etc…)
Type of
audience
Countries
addressed
Size of
audience
Partner
responsible
/involved
Table 2: Some relevant abstracts & conferences generated and performed related to ACCORD JA
Activity/
Product Aim of the activity Place Target audience/public Date Impact
Do not forget to attach all graphic/audio-visual material used or shown in mass media or Internet. Do not forget to include the ACCORD and EAHC logos in all
the communication and dissemination activities