As part of RECOVER, we will be collecting personal data on the participants, such as date of birth, sex, information on health and medical conditions as well as results from assessments completed as part of the study.
Any personal data which is provided to the study will be treated with the highest standards of security and confidentiality in accordance with Irish, UK, EU and international data protection legislation.
Each person in the study will be allocated a unique study code. A list matching the study codes with participants will be kept with the signed consent forms in a locked office of each hospital and be treated in the same way as a medical chart. From this point the participant’s information will only be associated with the study code, as opposed to their name or other identifiers. Participants identity will remain confidential, with no names published or disclosed to anyone outside the hospital setting.
Data generated as a result of this study will be retained for 20 years to ensure it is used to its fullest capacity. The data controller for the research data is RCSI and local hospital in each case is the data controller for the medical data held on site. Trinity College Dublin is the joint data controller for the psychology sub-study. The Centre for Advanced Medical Imaging at St. James’s Hospital is the joint data controller for the sinus disease sub-study. We may also collaborate with other research institutions in the future. For updates on new collaborations, please continue to check this website. The data processors are the lead and principal investigators, CF researchers and our collaborators. We may also collaborate with other research groups in the future, who may become data processors. Only coded samples and information will be shared with these collaborators.
The RECOVER research protocol will have been reviewed and approved by all clinical sites recruiting patients into the study prior to the study starting. Ethics committees ensure that the way the study is run is fair, transparent and safe. The role of the ethics committee is to protect the people taking part in the research. In the UK, the protocol was reviewed and approved by the Medicines and Healthcare products Regulatory Agency (MHRA). For more information about RECOVER and data protection or ethics please contact us at info@RECOVERCF.ie.