CLINICAL TRIAL NETWORK
The Clinical Trial network for Primary Ciliary Dyskinesia (PCD-CTN) was founded in 2020 under the framework of ERN-LUNG. This disease specific CTN consists of 28 clinical sites in 16 countries in Europe. The CTN has access to over 1700 adults and 1500 children with PCD that are potentially available for participation in trials.Â
The aims of PCD-CTN are to increase translational and clinical research by encouraging and contributing to initiation of randomized controlled trials in PCD and to facilitate development of new treatments in the field of PCD. To achieve these aims, improved access to patient populations is ensured by the network of participating clinical trial sites. The network also promotes a strong collaboration with patient organizations and pharmaceutical companies to accomplish these aims.
STRUCTURE AND CONTACTS
The PCD-CTN is headed by a coordinating center and is equipped with a steering and executive committee, a data safety monitoring board as well as committees for protocol review, training and standardization. The PCD-CTN also has a strong association with patient organizations and industrial companies.
Â
Members:
- CTN director : K.G. Nielsen
- Deputies: Johanna Raidt and Bernard Maitre
- ERN LUNG PCD CORE chair: Heymut Omran
- Coordinating Associated member: Petra Pennekamp
- 1 investigator from each PCD-CTN member site
- Executive Committee and additional committee members
- Representatives of PCD patient organizations
- Partners
All clinical trials first reviewed via the PRC. Performed by 1 or 2 permanent review groups all including PCD specialists, a study coordinator, a statistician, and a PCD patient or parent.
- Eric Haarman
- Woolf Walker
- Felix Ringshausen
- Helene Kobbernagel
- André Coste
- Lucy Dixon
- M. S. Destouches
- Lizan D Bloemsma
- June K Marthin
- Jobst Röhmel
- Pinelopi Anagnostopoulou
- Petr Pohunek
- Mieke Boon
- Ela Erdem
- Nagehan Emiralioglu
- Francesca Santamaria
- Mary Carroll
- Jobst Röhmel
- Eleonora Dehlink
- Nicola Ullmann
- Bülent Karadag
FOR PATIENTS
Our aim is to help development of new treatments for patients with Primary Ciliary Dyskinesia safely and efficiently, and therefore we have formed the Clinical Trial Network for Primary Ciliary Dyskinesia (PCD-CTN).
For us it is important to involve patient/parent representatives in the network. We feel that it is mandatory to keep patient organizations informed about ongoing trials and activities of the network. Thus, we have 1 patient representative in our steering committee and 3 in the protocol review committee. Furthermore, we have regular meetings with patient representatives.
FOR INDUSTRY
The aim of the Clinical Trial Network for Primary Ciliary Dyskinesia (PCD-CTN) is to increase clinical research by encouraging and contributing to initiation of RCTs in PCD and to facilitate development of new treatments in the field of PCD. The PCD-CTN has access to over 1800 adults and 1600 children with PCD that are potentially available for participation in trials.
The PCD-CTN can provide respective services:
- Access to a large amount of well characterized patients with PCD.
- Deliver feedback about study design and possibility of inclusion rate.
- Capabilities to deliver outcome measures adhering to quality assured standardized operating procedures.
- 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 the Director of PCD-CTN Prof. Kim Nielsen at Kim.G.Nielsen@regionh.dk