Training School 27th April 2016 BM1407 European Cooperation in science and Technology Jane Lucas Training School 27th April 2016 1

COST-Action Europe-led network of clinicians & scientists To promote research from basic science to clinical care Ultimate goal: -to develop treatments that lead to measurable improvements in long- term outcome of patients with PCD. Our proposal is for a COST Action network to underpin the research needed to provide treatments for patients with PCD. TALK TO SLIDE Over the next 20minutes will explain what PCD is, how far we have come in our understanding of PCD in recent years, and why this application is necessary and timely in our bid to improve the management of patients with this rare condition. 2 2

BEAT-PCD National funding 3

Objectives To promote basic research on PCD to underpin translational research To develop new treatments To improve diagnosis To maintain epidemiological datasets Understand the natural course of disease Influences of environment, management etc. Improve clinical care for patients Plan the conduct of clinical trials Multidisciplinary training Funding May 2015- April 2019 A multidisciplinary team came together to develop the vision for this COST ensuring the Action will have membership who feel ownership of the project and it’s vision. 4 4

National and Multinational Research Basic Science Clinical Care 100 112 Conferences Scientific missions Epidemiology Clinical Trials Workshops 88 Summer Schools 61 The MD group agreed that a COST Action provides the perfect platform needed for this network, leading to accelerated development of research programmes and avoiding duplication of work with optimal use of resources. We have planned 4 highly integrated WGs which rather than sticking to our silos will cross-fertilise through COST conferences, scientific missions, workshops and summer schools. This will all be underpinned by existing national grant funding, with the expectation that the COST will unleash new funding streams. Hence this COST will bring together currently separate groups in a truly innovative network. National and Multinational Research 5 5

Training School Coordinator Claire Hogg    Primary Deputy Chair Jane Lucas VC: Claudia Kuehni Training School Coordinator  Claire Hogg  ESRs: Laura Behan and Myrona Goutaki WG1:  Basic Science Dominic Norris  Mauro Pistello WG2: Epidemiology Claudia Kuehni  Jean-Francois Papon WG3: Clinical Care Kim Nielsen  Francesca Santamaria WG4: Clinical Outcomes Philipp Latzin  Nico Schwerk 6 6

Inclusiveness 162 participants Patient organisations UK, Swiss, German…..and more 76 Early stage researchers >50% female Inclusive: academic seniority, national or racial background, culture and disability. SME & Industry Cooperation It’s not just the current leaders who will make this project achievable. The opinions of patient representatives have been sought throughout…. ESRs are the future leaders. They will therefore have a priority place in this COST Action, and the Training School Coordinator will have particular oversight of their needs including mentoring. Eg. in the PCD TF that I Chair, of 23 members, 4 are in training posts. Two of them gave oral presentations at our launch meeting last month, all have taken important roles in the coordination and running of the first meeting, one is leading the communications for the network, one is leading on obtaining patient perspectives through a survey and in depth interviews, and 3 are undertaking systematic literature reviews to inform the task force. All will co-author the practice guideline that the TF is developing. It is worth noting that we aim for this COST Action to be inclusive of all forms of diversity. Aim to meet needs of different people and create environment where all participants feel comfortable whatever their academic seniority, national or racial background, culture or disability. 7 7

COST Inclusiveness Target Countries: Bosnia- Herzegovina, Bulgaria, Cyprus, Czech Republic, Estonia, Croatia, Hungary, Lithuania, Latvia, Luxembourg, Malta, Montenegro, Poland, Portugal, Romania, Slovenia, Slovakia, former Yugoslav Republic of Macedonia, Republic of Serbia, Turkey. 8 8

www.cost.eu/COST_Actions/ search for BM1407 www.cost.eu/Vademecum 9 9

www.beatpcd.org 10 10

@beatpcd 11 11

Disseminations All participants should acknowledge their participation on PCD manuscripts On PCD posters During presentations BEATPCD will contribute to open access fees where > 2 COST countries collaborate First author is an ESR/ clinical trainee/ AHP 12 12

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