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Promoting Research and Improving Care for Patients with PCD

This training school, led by COST Action Europe, aims to promote research from basic science to clinical care for patients with Primary Ciliary Dyskinesia (PCD). The ultimate goal is to develop treatments that lead to measurable improvements in long-term patient outcomes. The training school includes conferences, scientific missions, epidemiology workshops, clinical trials, and summer schools. It is open to participants from various countries, with a focus on inclusiveness and collaboration. For more information, visit www.beatpcd.org or follow @beatpcd on Twitter.

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Promoting Research and Improving Care for Patients with PCD

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  1. BM1407 • Jane Lucas • Training School 27th April 2016

  2. 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. 2

  3. BEAT-PCD National funding

  4. 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 4

  5. Clinical Care Basic Science Conferences 112 100 Scientific missions Epidemiology Clinical Trials Workshops 88 Summer Schools 61 National and Multinational Research 5

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  7. 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 7

  8. 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

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

  10. www.beatpcd.org 10

  11. @beatpcd 11

  12. 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

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