1. 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

2. CF population in Poland
approximately 2000 patients (unformal Registry)
1/3 adults
national NBS since July (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

3. 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

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

5. International cooperation
London - Royal Brompton Hospital
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 Dr Reka Bodnar from the CF Center in Budapest

7. 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

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 „The longitudinal monitoring of patients with CF SPID” Project leader : Katarzyna Zybert, MD, PhD contact „Genotyping of Pseudomonas aeruginosa strains isolated from cystic fibrosis patients” Project leader : Justyna Milczewska, MD, PhD contact

9. 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
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

10. National cooperation

11. Our CF Center members invite sincerely for collaboration
Thank you