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

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

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

ECFS-CTN Executive Committee members Paola De Carli (Patient Organisation representative) Damian Downey Lieven Dupont Michael Fayon Dorota Sands Silke van Koningsbruggen

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

We already did – international cooperation Thanks to international cooperation with Dr Reka Bodnar from the CF Center in Budapest

Participation in working groups of European Cystic Fibrosis Society European Cystic Fibrosis Neonatal Screening Working Group European Cystic Fibrosis Diagnostic Network Working Group European Psychosocial Special Interest Group European Cystic Fibrosis Nutrition Group

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

Invitation to join our already ongoing projects nutrition 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 Clinical implications: 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

National cooperation

Our CF Center members invite sincerely for collaboration Thank you