"Some newspaper will print it off, somebody will hack it, there will be a registry".
To our knowledge the EXCITING-ILD registry will be the first registry to document comprehensive and current epidemiological data as well as important health economic data for ILDs.
After 24 and 36 months, the individuals are followed by CATI and, as with cohorts 1 and 2, vital and cancer status will be checked at registry offices and the cancer registry afterwards (months 48 and 60).
The differences we have found between cancer registries will be explored by the registries and used in their continued quality assurance and improvement of the service.
Further, assessment of survival and health economics will be based on registry data and hence, blinded to intervention.
Outcome data will be measured using registry linkages, which increases the feasibility of the large sample size but may lead to some limitations in outcome adjudication.
Data from questionnaires will be combined with registry data from national social and health registers as well as with the relevant clinical data.
Although most patients in this analysis were from the German WAVE registry, further national registries will be included when available.
While the registry's agreement with Google is not exclusive, the registry will be allowed to license to others only the books whose authors and publishers have explicitly authorized it.
The principal aim of the clinical registry will be to identify still undefined subgroups of subjects with CM through a specially designed clinical registry to be applied in a large number of outpatients.
