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ERN-LUNG Academy

The ERN-LUNG Academy is a curriculum for medical staff at any stage of their career, who wishes to get a proof of knowledge on rare respiratory diseases. It consists of Webinars and eCases, but also includes on-site training in ERN-LUNG Centers. We call for applications from participants of EU-member States from September to November each year. Classes start in January. If you wish to apply for next year’s class, please send a letter of motivation to info@ern-lung.eu

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ERN-LUNG Online advance system

The EXpert Advisory BOard (EXABO) is a pan-European internet platform, which has been developed in the context of ERN-LUNG in liaison with the Medical Informatics Group of University Hospital Frankfurt, to answer questions on all aspects of rare respiratory diseases. The platform is primarily aimed at patients and care team members but is openly accessible by anyone who wants to ask a related question.

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PCD CORE

PCD Registry

INTERNATIONAL PCD REGISTRY

The international PCD Registry (CinicalTrials.gov NCT02419365), coordinated by Prof. Dr. Heymut Omran, University Hospital of Münster, Germany, aims to facilitate recruitment of patients for clinical studies and to provide data for epidemiological research. Data on family history, symptomatology, socio economic background, clinical manifestations, disease course, treatments, outcomes and natural history, as well as diagnostic data are collected. Patient data are continuously contributed by participating centers. For participation in the International PCD Registry the centers need to meet necessary legal and ethical requirements, which are depending on national conditions. The International PCD Registry is registered in the European Rare Disease Registries Infrastructure (https://eu-rd-platform.jrc.ec.europa.eu/erdri_en).

For more information please visit: https://www.pcdregistry.eu/

or contact: PCDregistry.eu@ukmuenster.de; heymut.omran@ukmuenster.de

REGISTRY STUDIES

1. Genotype / Phenotype Correlations

Study coordinators: University Children’s Hospital Muenster (Johanna Raidt, Heymut Omran & Petra Pennekamp)

contact: johanna.raidt@ukmuenster.de

2. Correlation between genotype and lung function of genetically confirmed PCD individuals in an international cohort (Registration (ClinicalTrails.gov): NCT04717005)

Study coordinators: University Children’s Hospital Muenster (Johanna Raidt & Heymut Omran), Copenhagen University Hospital (Kim G. Nielsen)

contact: johanna.raidt@ukmuenster.de; Kim.G.Nielsen@regionh.dk

3. Correlation between nasal NO levels and distinct PCD genotypes (e.g. course of clinical manifestations, diagnostics, lung function, etc.)

Study coordinators: University Medical Center Amsterdam (Eric G. Haarman); Copenhagen University Hospital (June K Marthin & Kim G. Nielsen); University Children’s Hospital Muenster (Johanna Raidt & Heymut Omran)

4. Assessment of phenotypic characteristics within sibling-pairs (e.g. diagnostics, clinical data, etc.)

Study coordinators: Medical School, University of Cyprus & Paediatric Pulmonology Unit, Archbishop Makarios III Hospital, Cyprus (Panayiotis Yiallouros & Panayiotis Kouis ); University Children’s Hospital Muenster (Heymut Omran); Copenhagen University Hospital (Kim G. Nielsen)

Contact: kouis.panayiotis@ucy.ac.cy; yiallouros.panayiotis@ucy.ac.cy

5. Incidence of PCD exacerbations over 12 months by age group, gender and chronic pseudomonas colonization status

Study coordinators: University of Cyprus & Archbishop Makarios III Hospital, Cyprus: (Pinelopi Anagnostopoulou & Panayiotis Yiallouros); University Children’s Hospital Muenster (Heymut Omran); Copenhagen University Hospital (Kim G. Nielsen)

Contact: anagnostopoulou.pinelopi@ucy.ac.cy;  yiallouros.panayiotis@ucy.ac.cy

FOR PATIENTS

The aim of PCD registries are to facilitate recruitment of patients  with Primary Ciliary Dyskinesia for clinical studies, to provide data for epidemiological research and to determine characteristics of PCD manifestation.

Patients with Primary Ciliary Dyskinesia interested in participating in clinical trials, disease specific registries and research projects can register in the population registry system and will be contacted by experts from the ERN-LUNG CORE.

Contact: ERN-LUNG_PCD-core@ukmuenster.de

ERN-LUNG POPULATION REGISTRY

Within ERN-LUNG, a population registry (https://www.popreg.ern-lung.eu) has been implemented. With this initiative patients interested in participating in clinical trials, disease specific registries and research projects can register in the system and will be contacted by experts from the ERN-LUNG CORE that covers the patient´s disease area such as PCD. This Population Registry is open to all interested patients and not restricted to specific countries.

Population Registry

FOR INDUSTRY

 For companies working on natural history/registry data the PCD International Registry can provide respective services:

  • Dataset with characterized patients incl.
  • Basic Characteristics Data
  • Basic PCD Diagnostics including genotype variant
  • Nukleotide/cDNA level
  • Protein level
  • Symptomatology
  • Clinical manifestations
  • Disease course
  • Body Measurements
  • Lung Function Assessments
  • Organ-related Conditions
  • Male Infertility and Semen Analysis
  • Microbiological Findings
  • Imaging
  • Therapy
  • Quality of Life QOL-PCD and SNOT-20/22
  • Experienced PCD physicians and researchers within PCD-CTN can also assist pharmaceutical companies in building of study designs.

For further information or enquiry please contact Prof. Heymut Omran at heymut.omran@ukmuenster.de