2 - Network organisation and process
|
Quality
Management |
Training and
Education |
Public
Involvement |
| Description | ||
|---|---|---|
Name |
SPACE - Severe Paediatric Asthma Collaborative in Europe |
|
| Existence of an identified contact person for external enquiries | Yes | Marielle Pijnenburg, co-chair of SPACE |
| Existence of an internal steering committee | Yes | The SPACE internal steering committee consists of existing Clinical Research Collaboration (CRC) members who are respiratory consultant physicians in tertiary asthma units in Europe, but also has representatives from patients and parents groups, and European Lung Foundation. |
| Existence of an external advisory steering committee directing the reporting party | No | SPACE is under the European Respiratory Society Clinical Research Collaboration (ERS CRC). |
| Existence of a website | No | Not available yet |
| Existence of newsletter | No | Not available yet |
| Existence of internal databases for disease, condition treatment and/or outcome | Yes | SPACE is a database for paediatric severe asthma, designed to assess differences in practice across countries, and to identity eligible patients for future clinical trials. The data stored are anonymised, and is managed by the reporting party. Data stored include patients age, investigation results (lung function, FeNO, IgE, etc), other comorbidities, quality of life, birth, social and family histories, and asthma treatments. Individual patient can only be identified by local centre where contact information is held. |
| Provisions to ascertain data protection and data security | Yes | The database is held by HIC at University of Dundee who provides a safe haven platform for data storage and management. This is the same platform as EMBARC (ERS CRC) database |
| Procedures to access the database by third parties | Yes | Third party access to the database will have to be authorised in writing by the steering committee. |
| Access to external databases/registries | No | Not available yet |
| Standardised process to access an external database | Yes | SOP to be set up - as database is still in early data collection phase. |