Applying for CFRI data

All applications will be reviewed by the CFRI Scientific Research Committee, who will decide if the data request will be approved or not, based on, but not limited to, the following criteria: merit, validity, relevance, feasibility and quality. This decision will be final. The release of data for marketing purposes is not permitted.

It is the responsibility of the applicant to obtain appropriate ethics committee approval for any research relating to the data supplied, and to submit this approval with the application. 

Once the application has been approved, and the applicant wishes to expand on the scope of work of project or would like to perform related analysis that require additional data, the additional request should be sent to info@cfri.ie.

It is advisable that templates of summary data tables are provided by the applicant. Alternatively, the CFRI statistician will create tables in a format considered appropriate.  

All applications will undergo a 2 week review, and producing the requested data-set will take a further 15-20 working days (minimum).  The CFRI charges a fee for the handling of the application (whether the application is approved or not), extraction and analysis.  To promote and stimulate research in CF, the handling and data extraction fee will be waived for academic researchers, research groups and patient organisations. 

Where data analysis is required, a fee will be charged.  The applicant will receive a cost-estimate based on the hours necessary. Once the cost-estimate is approved and signed, the CFRI will provide the dataset and an invoice for the actual hours spent on the analysis.

In exceptional cases, when the research objective is of interest to the CFRI and at the CFRI’s discretion, anonymised raw data may be released. If the research aim is of interest to the CFRI and approved by the Research Scientific Committee, potential collaboration with the CFRI can be discussed, including statistical analysis.