The time is right for an international PCD disease registry: insight and ongoing research activities

Myrofora Goutaki, Florian S. Halbeisen, Claudia E. Kuehni

Source: Eur Respir J, 49 (6) 1700357; 10.1183/13993003.00357-2017
Journal Issue: June

Congress or journal article abstractFull text journal articlePDF journal article, handout or slides

Rating: 0
You must login to grade this presentation.

Share or cite this content

Citations should be made in the following way:
Myrofora Goutaki, Florian S. Halbeisen, Claudia E. Kuehni. The time is right for an international PCD disease registry: insight and ongoing research activities. Eur Respir J, 49 (6) 1700357; 10.1183/13993003.00357-2017

You must login to share this Presentation/Article on Twitter, Facebook, LinkedIn or by email.

Member's Comments

No comment yet.
You must Login to comment this presentation.


Related content which might interest you:
From patients to research laboratories and back: overview of the major scientific achievements and their impact in TB diagnosis, clinical management and control
Source: Annual Congress 2013 –The best of TB PANNET
Year: 2013


Collating data from major European population studies – The CADSET (Chronic airway disease early stratification) clinical research collaboration
Source: Virtual Congress 2020 – New tools for risk stratification of obstructive diseases
Year: 2020




Recruitment in online research for COPD: leveraging social media and research registries
Source: ERJ Open Res, 5 (2) 00167-2018; 10.1183/23120541.00167-2018
Year: 2019



Pirfenidone: an update on clinical trial data and insights from everyday practice
Source: Eur Respir Rev 2014; 23: 111-117
Year: 2014



Patient participation in ERS guidelines and research projects: the EMBARC experience
Source: Breathe, 13 (3) 194; 10.1183/20734735.009517
Year: 2017



How to optimise patient and public involvement in your research: Doing science
Source: Breathe 2015; 11:223-227
Year: 2015


An international survey on genetics in clinical practice for interstitial lung disease.
Source: Virtual Congress 2021 – Exercise tolerance, supportive care and more in non-pulmonary fibrosis interstitial lung diseases
Year: 2021


Integrating patients with respiratory and cardiac disease in one rehabilitation programme: clinical outcomes of a pragmatic service evaluation.
Source: International Congress 2019 – Innovations in care for chronic respiratory conditions
Year: 2019


The benefits and challenges of involving patients as project partners: the professional perspective
Source: International Congress 2015 – Involve patients in research projects
Year: 2015



The primary care routine data registry BeoNet: First pilot phase results for COPD research
Source: International Congress 2015 – Patient health gains related to the economic effectiveness of disease management programmes
Year: 2015

A pathway to keep all lifelong learners up to date: the ERS continuing professional development programme
Source: Eur Respir J, 55 (2) 1902425; 10.1183/13993003.02425-2019
Year: 2020



The benefits and challenges of involving patients as project partners: the patient perspective
Source: International Congress 2015 – Involve patients in research projects
Year: 2015



Progressive respiratory disease: the importance of prognostic conversations and advance care planning
Source: Breathe, 13 (4) 269; 10.1183/20734735.012917
Year: 2017



Crowdfunding for respiratory research: a new frontier for patient and public engagement?
Source: Eur Respir J, 50 (4) 1701333; 10.1183/13993003.01333-2017
Year: 2017



Emerging challenges to the development and implementation of clinical practice guidelines – COPD as a case in point
Source: Annual Congress 2008 - Guideline development workshop summary: ATS/ERS integrating and coordinating efforts in COPD
Year: 2008


Lung function trajectory research: historical perspective and future prospects
Source: Research Seminar 2021 – Lung function trajectories from birth to death, health and disease, and pre-war to today
Year: 2021



Clinical use of new and repurposed drugs: the role and contribution of the ERS collaborative projects
Source: International Congress 2017 – In the frontline of the fight against tuberculosis
Year: 2017


The characterisation of interstitial lung disease multidisciplinary team meetings: a global study
Source: ERJ Open Res, 5 (2) 00209-2018; 10.1183/23120541.00209-2018
Year: 2019



A systematic review to assess the components of clinical decision support systems (CDSS) in chronic respiratory disease (CRD) and their relevance to physiotherapy management
Source: Virtual Congress 2021 – Digital health interventions in respiratory medicine
Year: 2021


Establishment of an integrated clinical network and comprehensive data warehouse for the conduct of comparative effectiveness research in COPD
Source: Annual Congress 2011 - COPD: integrated care and rehabilitation
Year: 2011