CF Registry of Ireland

Turning Data into Information

The Cystic Fibrosis Registry of Ireland (CFRI) was established in 2002. A patient registry is a secure, centralised database, containing health data on people with a specific diagnosis or condition.

The role of the CF Registry is to collect and record information on the health status of people with cystic fibrosis (CF) who agree to participate. By collecting and analysing information on all people with CF in Ireland, the Registry can better understand their health and wellbeing, and the treatments they receive.

CFRI also provide consultation services on patient registry development, governance and operation, registry research project management and statistical analysis services to researchers, research bodies and patient organisations.

The CF Registry of Ireland is made up of four staff, who we would like to introduce you to below:

Godfrey Fletcher Godfrey Fletcher has been the Chief Executive Officer of CFRI since 2009.

He has a master’s degree in Business Administration, an honours degree in Natural Sciences, as well as a qualification as a European Certified Data Protection Officer. Godfrey plays an active role in the development of registries, both in Ireland and internationally. His international business experience, as well as management experience for not-for-profit patient and research organisations brings a unique perspective to the development of patient registries.

Laura Kirwan Laura Kirwan is the Head of Research at the Cystic Fibrosis Registry of Ireland.

She holds a PhD in Statistics and worked as the CFRI Research Statistician before commencing her role as Head of Research in September 2020. She has had a varied career as a statistician, holding roles in environmental science, health and nutrition, before moving to the CFRI in 2016. Laura also lectures in Statistical Programming and Research Methods in UCD.

Sumesh Babu Sumesh Babu, Senior Research Associate, has a master’s degree in Nursing from the University of Limerick, as well as having a background education in Microbiology and Clinical Research. Prior to joining the registry, Sumesh worked as a research coordinator, splitting his time between UCD and the Mater Hospital.

Sumesh is actively involved in the data collection process and works very closely with hospital-based data collection teams ensuring that data quality and accuracy is maintained.

Huw Rees Huw Rees is a Postdoctoral Research Fellow and Data Analyst who has been working with the Cystic Fibrosis Registry of Ireland since June 2020.

He was recently awarded a PhD from the School of Public Health, Physiotherapy and Sport Science in UCD, following the defence of his thesis investigating injury trends in field hockey athletes. Huw also holds a bachelor’s degree in Physiotherapy and is currently undertaking projects within the registry in this area.

The work of the registry not only helps to shape and improve CF care in Ireland, but it also allows CFI to better support the needs of the CF Community.

Participating in the registry has indirect benefits in terms of having better information that can help improve planning and delivery of care and services that a person with CF receives. The more people that participate, the better the quality of the information that can come out of the registry.

If you would like to participate in the registry, please contact your CF Centre of the CF Registry at info@cfri.ie. As outlined in the Winter 2020 edition of Spectrum, due to changes in GDPR, CFRI need to ask you to re-confirm your consent for them to collect this information. If you have not re-confirmed your consent, please contact your CF Centre or the Registry.

Participation is entirely voluntary. You are free to revoke your consent and withdraw from the registry at any time.