D - Description
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | |
|---|---|
Name |
ECFS-CTN - European Cystic Fibrosis Society - Clinical Trials Network |
| Year of foundation | 2008 |
| Preterm and/or term newborn | Yes |
| Infants from 1 month to less than 24 months of age | Yes |
| Children from 2 years to less than 12 years of age | Yes |
| Adolescents from 12 years to less than 18 years | Yes |
| Paediatric age ranges of study participants covered by the network | newborn to 17 years |
| Multispeciality? Specify | No |
| Speciality/disease specific? Specify | Disease specific: Cystic Fibrosis |
| Conditions covered? Specify | Cystic Fibrosis |
| Procedure/Intervention specific? Specify | No, we cover all interventions as well as observational studies. |
| Number of collaborating countries | 17. |
| List of collaborating countries | Our current collaborating countries are: Austria, Belgium, Czech Republic, Denmark, Germany, France, Hungary, Ireland, Israel, Italy, Poland, Portugal, Spain, Sweden, Switzerland, The Netherlands, UK |
| Number of collaborating centres | 54 |
| List of collaborating centres | http://www.ecfs.eu/ctn/list-ctn-centres |
| Type of activity/studies | |
| Clinical Studies | Yes |
| Experimental research | Yes |
| Other activity | • Site Training • Standardization of procedures (outcome parameters) • Central reading hubs for certain outcome measures • Protocol review • Networking for investigators and research coordinators • Informing & educating people with CF about clinical trials • Developing patient-reported outcome tool • Encourage, support & facilitate investigator-initiated trials • Participate in European projects (e.g. HIT-CF Europe, ERN Lung), and collaborations to improve clinical trials (e.g. Enpr-EMA, Conect4Children, Coalition for Reducing Bureaucracy In Clinical Trials) |