How is information collected?
Your consent authorises CFRI to access your (your child’s) medical records, collect and record your medical information. The CF team(s) or approved CFRI staff take the relevant medical information from paper-based and electronic hospital(s) records, and information on healthcare services used from the Health Service Executive (HSE). Keeping participants registry records up-to-date requires a lot of work and takes time.
What is collected?
Information on your diagnosis, CF genetics, weights, heights, lung function measurements, test results, health complications, medicines and treatments, hospitalisations, healthcare services use and information about how the condition and treatments have an impact on you.
How is the information protected?
We will comply with the General Data Protection Regulation (GDPR) (2018) and the Data Protection Act 2018 in processing participant data. These regulations safeguard individuals fundamental right to data privacy. Password protection and encryption of computer files and data, training of staff in data protection and regular review of data protection procedures are some of the ways we protect your (your child’s) information. Further information is available from firstname.lastname@example.org.
Is the information confidential?
Yes. Making sure personal information is private and confidential is extremely important to us. Participants are allocated a unique record number on registration. Information that could directly identify an individual, like name and date of birth, is hidden in the registry record. Only certain people can identify participants personally: approved CFRI staff and authorised contractors, your consultant doctor and your CF team. Participants will never be identified by name in published research and annual data reports. Annual data reports are available here.