Privacy Policy

This Policy is effective as of 25 May 2018

At Mapi Research Trust we are committed to protecting your privacy. We do need additional information about you in order to provide the information or services you are requesting and this Privacy Statement explains data collection and use in those situations. Please read the complete Privacy Policy.

Collection of your Personal Information

This applies to all information collected or submitted to Mapi Research Trust through our websites ePROVIDE™ and mapi-trust.org. We will ask you when we need information that personally identifies you ("personal information" or "data" as used herein) or allows us to contact you. Personal information collected by Mapi Research Trust is often limited to names, e-mail address, language, country or location, but may include other information when needed to provide a requested service. We collect information in several ways, outlined below:

1. On some pages you can register or subscribe for Mapi Research Trust services. The personal information collected to access Mapi Research Trust information or services is your name, e-mail address, employer name, phone number, country location, password, payment details, occupation and your ISOQOL membership.

2. On some pages you may choose to provide personal information about yourself if you are interested in receiving services from Mapi Research Trust. In each case the information requested will be dependent upon the area of interest being pursued.

3. On some pages you can register to receive customized information. This information is generally collected on "Request" forms where you may choose to be contacted by Mapi Research Trust. The personal information collected in these cases include your name, title, company, address, contact details, e-mail address, phone number, information on the financing of the study, description of request (free text entered by you), name of questionnaires to be used by you, and list of languages.

4. On some pages you can register to download information from Mapi Research Trust. This information is generally collected on “User Agreement” forms. The personal information collected in these cases include your name, title, company, address, contact details,  e-mail address, phone number, context in which you will use the questionnaire, planned term for the project (date), disease or condition, type of research, study protocol or reference, number of patients, number of submissions per patient, mode of administration, name of questionnaires to be used by you, and list of languages.

5. Mapi Research Trust also collects certain information about your computer hardware and software. This information may include; your IP address, browser type, operating system, domain name, access times and referring Web site addresses. This information is used for the operation of the service, to maintain and monitor quality of the service and to provide general statistics regarding use of Mapi Research Trust.

Use of your Personal Information

We may use your personal information for the following purposes:

  • To ensure our websites and databases are relevant to your needs.
  • To deliver services and information about Mapi Research Trust that you request.
  • To assist Mapi Research Trust in creating and publishing content most relevant to you.
  • To alert you to updated information about Mapi Research Trust and Mapi Research Trust services if you so request.
  • To allow you access to limited-entry areas of Mapi Research Trust as appropriate.

In some cases our use of your information is based on your consent. In other cases we process your personal information because it is necessary to deliver a service you have requested. Otherwise, Mapi Research Trust processes your personal information on the basis of its legitimate interests in using your data for the purposes described in this Privacy Policy. Examples of our legitimate interests include the following:

  • Processing your information in relation to services you have requested;
  • To correct technical errors and to technically process your personal information;
  • To protect the security and integrity of Mapi Research Trust;
  • To protect any Mapi Research Trust property or rights or obligations and/or the property, rights or obligations of third parties where Mapi Research Trust may have an obligation or liability in respect of these; and
  • To take precautions against potential liability on the part of Mapi Research Trust.

To ensure that we are appropriately balancing Mapi Research Trust legitimate interests against your rights and interests, you are entitled to object to such processing at any time as described under “Your Personal Data Rights” below.

Mapi Research Trust may also process and disclose your personal information to the extent required by law, applicable regulation or judicial process.

Data Privacy Principles

Mapi Research Trust respects the privacy rights and interests of its web site visitors, users and subscribers and the following principles will be applied by Mapi Research Trust when dealing with personal information:

Mapi Research Trust will process your data lawfully, fairly and in a transparent manner and for specified, explicit and legitimate purposes. This means that your data will be collected and processed for the purposes specified in this Privacy Policy and in accordance with any other purposes which are notified to you at the time you provide your information to Mapi Research Trust.

Data will be adequate, relevant and limited to what is necessary in relation to the purposes for which it was provided.

Data will be as accurate as possible and, where necessary, kept up to date. You are encouraged to ensure your personal information is kept up to date and amend any such data, which is inaccurate or out of date (e.g. name and address) by contacting us in the event of a change.

Data will not be kept in a personally identifiable format for longer than is appropriate or necessary for the purposes for which it is being processed. We store the information you provide in a secure electronic database in order to provide you with the information and/or services you request. Depending on the nature of the information, it is usually stored for a number of years in accordance with our data retention policies unless you request that it be removed.

Appropriate technical and organisational measures will be taken to prevent unauthorised or unlawful processing and to protect against accidental loss, destruction or damage. This site and the electronic database have security measures in place to protect the loss, misuse, unauthorized access or disclosure, alteration or destruction of the information under our control.

Data will be collected, used and retained in accordance with the legal rights of the data subjects (see below under Your Personal Data Rights).

Information Collection

Generally the information you provide to us on our websites is received directly by Mapi Research Trust.  Subject to local legal requirements, Mapi Research Trust also use ICON plc and its affiliates and external services to collect, process and/or validate personal information. Mapi Research Trust requires that ICON plc and any such affiliate or external service will ensure adequate protection for personal information and complies with local legal requirements.

Disclosure to Third Parties

Mapi Research Trust may be obliged to disclose certain personal information to third parties such as Government Authorities or law enforcement agencies or to provide information in respect of a matter related to public safety. It may also be necessary to disclose personal information so as to protect the legal interests and other rights of Mapi Research Trust, subject to local legal requirements.

Mapi Research Trust may disclose certain personal information to a supplier or contractor organisation supplying services which require the use and/or creation of personal information. In these cases, Mapi Research Trust ensures adequate security is observed by third parties and affiliates processing personal information on behalf of Mapi Research Trust, subject to local legal requirements.

Disclosure Outside of the EU

To operate as a global business it may be necessary to process and transfer personal information within Mapi Research Trust businesses and to ICON plc and its affiliates who support the on-going operations of Mapi Research Trust. This may involve transferring personal information outside the European Economic Area (EEA) to the USA and elsewhere. Mapi Research Trust may also transfer your personal information to third party service providers outside of the EEA.

Regardless of whether the transfer is to the ICON group or to a third party, Mapi Research Trust will apply appropriate safeguards to such transfers as required by applicable law. For example, ICON relies on EC approved Standard Contractual Clauses to permit the transfer of personal data within the ICON Group and where applicable enter into Standard Contractual Clauses with Third Party Vendors.

Sensitive Personal Data

Mapi Research Trust will not normally receive Sensitive Personal Data through its website. This is defined by Mapi Research Trust as:

  • demographic data (e.g. sex, race, colour, ethnic or national origin, religion, philosophical or political beliefs, trade union membership and criminal proceedings); and
  • medical data (e.g. pre-placement medicals, and other medical documents produced for the purposes of employment, such as, drug screen results)

If you choose to provide us with Sensitive Personal Data, Mapi Research Trust may process this type of data for the purposes of equal opportunities monitoring, or if it is prescribed by law, or it is needed for the protection of life, health or freedom subject to appropriate security safeguards and local legal requirements. If required by local law, your explicit consent may be obtained to the processing of sensitive personal data.

Your Personal Data Rights

You have certain rights to the personal information that Mapi Research Trust holds about you. Subject to certain legal limitations, these rights include the following:

  • The right of access to your personal information plus additional ancillary information such as the origin of such data, the purposes for which it has been collected, processed and transferred and the recipients of such data.;
  • The right to rectify or erase your personal information (right to be forgotten);
  • The right to restrict the processing of your personal information;
  • The right of data portability. i.e. the right to have your data returned to you or to a third party in certain cases;
  • The right of objection where Mapi Research Trust is relying on its legitimate interests as explained above; and
  • The right to object to automated decision making, including profiling (which is not generally applicable to Mapi Research Trust in the case of personal data provided via its website).

To exercise any of these rights, you should refer to "Contact Information" below. Mapi Research Trust will assess your request in accordance with its Data Subject Rights Request Procedure and, subject to applicable laws and exceptions, will respond within the relevant legal time limits.

If you disagree with the accuracy or completeness of any personal information, please notify Mapi Research Trust in accordance with "Contact Information"; below Mapi Research Trust will endeavour to resolve any issues concerning your personal information in accordance with relevant procedures.

Protection of Children's Personal Information

Mapi Research Trust is a general audience site and no part of the site is structured to attract children. It is Mapi Research Trust’s view that the nature of the subject matter is unlikely to be of general interest to children but notwithstanding this, Mapi Research Trust does not knowingly collect any personal information from children.

Notification of Changes

As Mapi Resarch Trust evolves and as privacy laws and regulations change, it may be necessary to revise or update our Privacy Policy. When we do we will also revise the "last updated" date at the top of the Privacy Policy.

Contact Information or Complaints

If you feel your data protection rights have been infringed by Mapi Research Trust, you have the right to complain to your local data protection supervisory authority. The lead supervisory authority for ICON in Europe is the Data Protection Commission (see www.dataprotection.ie).


Questions or comments related to this policy should be submitted to the Global Data Protection Officer as follows:
Global Data Protection Officer, ICON plc, South County Business Park, Leopardstown, Dublin 18, Ireland and Data_Privacy_Officer@iconplc.com