Warsaw Cystic Fibrosis Center in Dziekanów Lesny Possibilities of collaboration

1. Warsaw CysticFibrosis Center in Dziekanów Lesny Possibilities of collaboration Monika Mielus, PhD, RD prof. Dorota Sands - Head of CysticFibrosis Centre CF Better together - 28 September – 01 October, 2017

2. Gdańsk Szczecin Warszawa Poznań Łódź Wrocław Katowice Kraków CF population in Poland • approximately 2000 patients (unformal Registry) • 1/3 adults • national NBS sinceJuly 2009 (pilot in 1999) • prevalence of CF-1: 4000 (data from NBS) • about 80 newdiagnoseseveryyear 2,0

3. Our multidisciplinary CF Team MD, pediatrician MD, PhD pediatrician, pulmnologist, transplantologist MD, PhD pediatrician, pulmnologist MD, orthopedist Head of CysticFibrosis Centre prof. Dorota Sands MD, pediatrician MD, PhD pediatrician, pulmnologist PhD, dietitian dietitian MSc , main nurse MSc, physiotherapist MD, resident MSc, physiotherapist MSc, technician PhD, psychologist MSc, clinical trial coordinator

4. ECFS-CTN ExecutiveCommitteemembers Paola De Carli (PatientOrganisationrepresentative) Damian Downey Lieven Dupont Michael Fayon Dorota Sands Silke van Koningsbruggen

5. International cooperation London - Royal BromptonHospital Copenhagen Paris – Pasteur Institute, Necker Hospital, Inserm Berlin Vienna Brussels Kiev Leuven Verona Lviv

6. We already did – international cooperation Thanks to international cooperation with DrRekaBodnar from the CF Center in Budapest

7. Participation in working groups of European Cystic Fibrosis Society

8. Invitation to join our already ongoing projects pulmonology „Qualification of children with cystic fibrosis for lung transplantation” Project leader : Katarzyna Walicka-Serzysko, MD, PhD contact e-mail: katarzyna.walicka@szpitaldziekanow.pl „The longitudinal monitoring of patients with CF SPID” Project leader : Katarzyna Zybert, MD, PhD contact e-mail: katarzyna.zybert@szpitaldziekanow.pl „Genotyping of Pseudomonas aeruginosa strains isolated from cystic fibrosis patients” Project leader : Justyna Milczewska, MD, PhD contact e-mail: j.mil@op.pl

9. Invitation to join our already ongoing projectsnutrition and psychology • „Compliance to the nutritional guidelines in children diagnosed through Cystic Fibrosis Newborn Screening - the impact of emotional factors and the knowledge of parents” – PILOT STUDY • Project leader : Monika Mielus, PhD, RD • contact e-mail: mmielus@wp.pl • Clinicalimplications: • The first study which will assess the compliance and its psychological aspects in evaluated group of cystic fibrosis patients and parents. • The identification of specific factors that influence compliance with nutritional recommendations and beneficial clinical outcomes could be helpful in supporting the families in more effective self-management. The aim of our study is to investigate the influence of emotional factors and the level of specific to CF nutritional knowledge of parents on the implementation of nutritional guidelines in children diagnosed during the Cystic Fibrosis Newborns Screening (CF NBS) AND COMPARE WITH OTHE EASTER EUROPEAN COUNTRIES

10. National cooperation

11. Our CF Centermembers invite sincerely for collaboration Thank you