Privacy policy

Purpose and scope

We are the Cystic Fibrosis Registry of Ireland (CFRI) CLG (“we”, “us” and “our”), a company incorporated under the laws of Ireland with company registration number 635291 and a registered charity (CHY22249 & CRA20065638 ), whose registered office is at Woodview House, University College Dublin, Belfield, Dublin D04 W1V8, Ireland. The principal objects for which the CFRI is established are to provide for the relief of sickness, disease and human suffering and to advance education by facilitating and undertaking research and providing accurate reports in order to monitor and improve treatments which will contribute to the improving quality of care and outcomes of persons with cystic fibrosis. In this Privacy Policy (“Policy”), references to “you” means the individual whose personal information (as defined below) we collect, use and process, whether this information is collected on the Services, in person, by telephone or otherwise and will apply whether you provide us with the personal information yourself or it is provided by a third party.

The CFRI is committed to protecting the privacy and personal data of our members and supporters in compliance with the Data Protection Acts 1988 and 2003 and will comply with all applicable legislation including the General Data Protection Regulation (“GDPR”), and the Privacy and Electronic Communications Regulations 2003.

This statement outlines how CFRI collect, process, store and manage the personal data you provide to us. Please read the statement carefully to understand our views and practices regarding your personal data and how we will treat it. By visiting and all sub-domains you are accepting and consenting to the practices described in this statement.

Please note the terms of this statement are subject to change, please review before supplying any information.

If you have any queries in relation to this statement or to request a copy of the Cystic Fibrosis Registry of Ireland’s Data Protection Privacy Policy please contact the Data Protection Officer at or phone 01 716 3177.

For the purposes of GDPR, the Data Controller is the Cystic Fibrosis Registry of Ireland.

Our site and subdomains may, from time to time, contain links to and from the websites of our partner networks, advertisers and affiliates. If you follow a link to any of these websites, please note that these websites have their own privacy policies and that we do not accept any responsibility or liability for these policies. Please check these policies before you submit any personal data to these websites.

Personal data we may collect about you: first name, surname, postal address, e-mail address, phone number, date of birth, your personal preferences about being contacted and your comments about our services. The CFRI collects details provided by you for the purpose of providing a response to queries you have in relation to our services.

All information that we hold concerning you as an individual will be held and processed by the CFRI strictly in accordance with the provisions of the Data Protections Acts 1988 and 2003. Such Data will be used by the Organisation to administer our relationship with you as a valued customer or member and to provide you with information about CFRI activities, events and news.

Personal Data you give

You may give us personal data about you, when you enquire about our activities, fill in forms on our website or correspond with us by phone, e-mail or social media. This includes, but is not limited to, information you provide when you share information via websites which we manage. The information you give us may include your first name, surname, postal address, e-mail address, phone number, date of birth, your personal preferences about being contacted, your comments about our services and your photograph.

This information can be captured through direct contact initiated by you or through filling out the following forms, either online or on paper, for example a contact request or job application.

Automatically collected information

When you visit our Website, information about your visit, including the full Uniform Resource Locators (URL), clickstream to, through and from our Website (including date and time), items you viewed or searched for, page response times, download errors, length of visits to certain pages, page interaction information (such as scrolling, clicks, and mouse-overs), methods used to browse away from the page, any phone number used to call our customer service number and other communication data and resources you may access are automatically collected.

Our use of your personal data

All information that we hold concerning you as an individual will be held and processed by CFRI strictly in accordance with the provisions of the Data Protections Acts 1988 and 2003. The information you provide will be used solely for the purpose for which you provided it. We may use your personal data for a number of operational purposes, including, but not limited to:

  • Carrying out our obligations arising from any contracts entered into between you and us and to provide you with the information and services that you request from us
  • Providing you with information about other opportunities to support CFRI where you do not object to receiving such information
  • Providing you, or permitting selected third parties to provide you, with information about goods or services we feel may interest you

Such Data will be used by the Organisation to administer our relationship with you as a client and to provide you with information about CFRI activities.  We will contact you by the information you provided upon contacting the CFRI.

CFRI will not, without your consent, supply your name and addresses to any third party.

Security – How we store and protect your information

CFRI takes, and will continue to take, all reasonable steps (which includes relevant technical and organisational measures and security features ) to guarantee the safety of the data you provide to us and we will only use the data for the intended purpose. We will take steps to try prevent unauthorised access to, unlawful processing or disclosure of your personal data.

CFRI will take all reasonable steps necessary to ensure that your personal data is processed securely and in accordance with this Privacy Statement.

Disclosure of your information

We may disclose your personal information to third parties in the following circumstances:

If we are under a duty to disclose or share your personal data in order to comply with any legal obligation, or to protect the rights, property, or safety of any CFRI entities, our clients, our service recipients or others. This includes exchanging information with other companies and organisations for the purposes of national security and fraud protection.

Where we engage the services of third parties, such services are covered by an appropriate contract, and any data acquired in the course of such services is processed in compliance with the GDPR. For example in relation to bulk mail-outs.

Cookies and IP addresses

With regard to each of your visits to our site, we may automatically collect the following information:

Cookies are small text files placed on your computer or mobile when you browse websites that track, save and store information about the user’s interactions and usage of the website. This allows the website, through its server to provide the users with a tailored experience within this website.

Technical information, including the Internet protocol (IP) address used to connect your computer to the Internet, your login information, browser type and version, time zone setting, browser plug-in types and versions, operating system and platform

Information about your visit, including the full Uniform Resource Locators (URL) clickstream to, through and from our site (including date and time); products you viewed or searched for; page response times, download errors, length of visits to certain pages, page interaction information etc.

Access to information

CFRI will endeavour to ensure that the information we hold will be accurate and up to date. The accuracy of your information is important to us. Please inform us of any changes to your personal information. Your rights with regard to your information As an individual, you have a right under the Irish Data Protection legislation, to obtain information from us with regard to our processing of your data. 

Data protection

You have the right to access personal data we hold which relates to you, including a description of the data we hold on you, how we acquired such data, and the purposes for which it is being used. This right requires that you will be given a copy of your personal data which you may have supplied to us via the Site or in other correspondence and interactions.

To exercise this right, you must make your request in writing, posting it to our address as specified and including with the request an item such as a utility bill which will verify your address. No fee is required for this service.

A request will be dealt with as soon as possible and we will respond to your request within one month from the date on which your request was received.

You have the right to have inaccurate personal data corrected. If you discover that we hold inaccurate personal data about you, you have a right to instruct us to correct that information. Such an instruction must be in writing and must contain evidence of the correct information. We will respond as soon as possible, and in any event within one month from the date on which your instructions are received.

Furthermore, we will share your corrective instructions with any organisation with whom the incorrect information has been shared in the 12 months prior to the date of your instructions.

In certain circumstances, you have the ‘Right to be Forgotten’. This means that you can request that CFRI removes any and all references to you from our records and systems. We will comply with all such requests in a timely manner, as required by the Data Protection Regulation, unless other operational or legal obligations require us to retain such data for a particular purpose or period of time.

You have the right, at all times, to restrict or object to processing of your personal data which you find intrusive, excessive or unwarranted. CFRI will respect your right to do so, but may need to continue such processing where required do to so by law, or within the terms of an existing contractual arrangement.

Where technically feasible and appropriate you have the right to data portability.

If you feel your personal data has been processed inappropriately, please let us know and we will do everything we can to rectify the situation.

You have the right to lodge a complaint with the Irish Office of the Data Protection Commissioner if you feel your rights or freedoms have been infringed upon.

Office of the Data Protection Commissioner

Canal House, Station Road, Portarlington, Co. Laois, R32 AP23, Ireland

Phone: +353 (0761)104 800, Email

Your consent

By using our website, you consent to our website’s privacy policy (this page).

By providing us with your personal data, you consent to the collection and use of this information in accordance with the purposes described above and this privacy statement; and you agree to allow us to share your details with other organisations who may fulfil your order or query on our behalf.

Changes to our Privacy Policy

We reserve the right to make changes to our privacy statement at any time.

Any changes we may make to our privacy statement in the future will be posted on this page.

Please check this  page and the Privacy Statement occasionally to see any updates or changes to our privacy statement.

Regularly reviewing this page ensures you are always aware of what information we collect, how we use it and under what circumstances.

What if I do not agree with this Privacy Policy?

If you do not agree to our processing of your data in the manner outlined in the Policy, please do not submit any personal data to us.

Contact us

Questions, comments and requests regarding this privacy statement are welcomed and should be addressed to Data Protection; Address:             

Cystic Fibrosis Registry of Ireland, Woodview House, UCD Belfield, Dublin D04 V1W8, Ireland.

Phone: +353 (0) 1 716 3177, Email:

We are using cookies on our website

Please confirm, if you accept our tracking cookies. You can also decline the tracking, so you can continue to visit our website without any data sent to third party services.