DATA PROTECTION NOTICE FOR USE ON PATIENT RECRUITMENT PORTAL

  1. PURPOSE AND SCOPE OF NOTICE

The http://uc-study.com/ website (the "Website") is operated by Geek Certified and used by Sublimity Therapeutics Holdco Limited ("Sublimity" or "we", "our" or "us") to gather information for the purpose of conducting a clinical research trial ("CRT"). This Data Protection Notice (the "Notice") is intended to explain how your Personal Data will be handled by Sublimity as a controller and sets out the information including the personal information detailed below relating to you ("Personal Data") that will be collected and processed by us.

This Notice, together with our Cookies Policy at uc-study.com/cookies-policy.html applies to your use of the Website.

  1. YOUR PERSONAL DATA COLLECTED & PROCESSED

IMPORTANT: Please note that the below list of Personal Data we may collect about you, while intended to be as complete and accurate as reasonably possible, is not exhaustive and may be updated from time to time.  

We collect and process the following Personal Data from you:

Device Information

When using the Website or availing of services relating to the

Website, personal information is collected from you by

Sublimity. This may include information about:

  • your device browser including your IP address; the type of device you used to access the internet; whether you reached the Website using a search engine or if you clicked a link on another website; and other information derived from cookies used on the Website.

  • details of your visits to the Website such as traffic data, location data and Linked Websites that you can access through the Website ("Linked Websites").

You can choose to provide us with the following Personal Data:

Participation Eligibility Form – Your Details

You may choose to give us additional information about your

first name, last name, email address, date of birth, gender,

zip/postal code and phone number when submitting details on

the Website regarding your potential eligibility for our CRT.

Participation Eligibility Form – Special Categories of Personal Data  

Although Sublimity does not provide Website users with medical advice, diagnosis or treatment, you can choose to provide us with the following health data in order for us to determine your suitability for our CRT:

  • information about your experience with ulcerative colitis ("UC"), including:
  • you have been diagnosed with UC;
  • how long you have been experiencing UC;
  • whether you are attending the bathroom for bowel movements more frequently; and whether you are experiencing blood in your stool.
  • whether you are experiencing a worsening of your UC symptoms
  • are your UC medications are working the way they should be

We collect this information through your selection of 'yes' or 'no answers when you are completing the Website questionnaire. You may also choose to share health information with us via email.

We may obtain the following Personal Data about you from other parties:

Third Party Information

  • We may receive limited information from your social media platforms, such as Facebook, YouTube, Twitter and LinkedIn, when you interact with us via such platforms. This includes information such as details of how you shared the website via the social media resources on the Website.

3.         Legal Bases and Purposes

We process information held about you on the following lawful bases and for the following purposes:

Legal Basis

Necessary for the Performance of a Contract

Purposes

It is necessary to process your personal data to enter into and perform our contract with you in relation to your participation in our CRT as set out in the Terms of Use. We will process your personal data on this basis for the following purposes:

  • To create your personal profile for our CRT records.
  • To facilitate the provision of online support and other services.

If you do not provide us with your personal data for these purposes, we will not be able to enter into or perform our contract with you and we will not be able to determine whether you are a suitable candidate for our CRT. 

Legal Basis

Legitimate Interests

Purposes

It is necessary for the purpose of our legitimate interests to collect and process the Personal Data for the following purposes:

  • To provide, improve, test and monitor the effectiveness of the Website.
  • To monitor metrics such as total number of visitors, traffic data and demographic patterns.
  • To respond to any queries or requests submitted by you regarding the Website or the CRT.
  • To process and respond to the questionnaire answers submitted by you via the Website and to contact you in response to these answers.
  • To provide you with information in relation to our CRTs.

Where we rely on this legal basis to process your Personal Data we will take appropriate steps to ensure the processing does not infringe your rights or interests. We will not process your Personal Data on this basis if we believe these interests are overridden by your interests or fundamental rights and freedoms.  You have the right to object at any time to the processing of your personal data carried out on this basis.

Legal Basis

Consent

Purposes

We collect and process your health data after obtaining your explicit consent to do so for the purposes set our below:

  • To create your clinical profile for our CRT records.
  • To determine whether you are a suitable candidate for our CRT.

You may withdraw consent for us to process your health data at any time, however please note that any processing carried out before you withdraw your consent will remain valid.

Legal Basis

To Comply with a Legal Obligation

Purposes

We may process your personal data as necessary in order for us to comply with obligations imposed on us by applicable laws and regulations.  

  1. DISCLOSURE OF YOUR PERSONAL DATA

All third-party service providers engaged by us are required to take appropriate security measures to protect your Personal Data. We may disclose some or all of the Personal Data we collect from and obtain about you to the following third parties for the purposes of administering our CRT:

  • Service & Insurance Providers: Service providers for logistical and IT services purposes.
  • Consultants: Sublimity-appointed consultants and researchers who may use this information to complete their objectives as part of our CRT.

  • Law Enforcement Agencies or Regulatory Authorities: We may disclose your information if we are under a duty to disclose or share your personal data in order to comply with any legal or regulatory obligation or request.

  • External Advisors: We may disclose your information to external advisors such as lawyers, accountants and auditors (as necessary to protect Sublimity's legitimate and legal interests in the performance of its business affairs).

  1. STORING AND TRANSFERRING OF YOUR PERSONAL DATA

The data we collect from you will be transferred to, and stored at, a destination outside of the European Economic Area ("EEA"). It will also be processed by staff or contractors operating outside of the EEA who work for us or for one of our suppliers.

We only transfer your Personal Data outside the EEA where the EU Commission has decided that the third country in question ensures an adequate level of protection in line with EU data protection standards OR there are appropriate safeguards in place to protect your personal data. If you would like to find out more about the appropriate safeguards that we have in place to govern the transfer of your personal data you can contact us at DPO@sublimitytherapeutics.com.  All information you provide to us is stored on our secure servers or the servers of our service providers, contractors or suppliers.

  1. RETENTION OF YOUR PERSONAL DATA

We will retain your personal information for as long as is reasonably necessary to determine whether you are a suitable candidate to participate in our CRT, after which we will securely destroy your personal information in accordance with applicable laws and regulations.

  1. LINKED WEBSITES

The Website may contain links to other websites. Sublimity is not responsible for the data protection notices or practices on Linked Websites. This Notice governs only information collected on the Website. When accessing Linked Websites, you should read the privacy notice published on the relevant Linked Website. The terms of our Notice do not apply to Linked Websites. Please check these privacy notices before you submit any Personal Data to Linked Websites.

We accept no liability in connection with any Linked Website, or any contract entered into with any third party on or through a Linked Website.

  1. YOUR RIGHTS

The table below sets out the rights which you have to address any concerns or queries with us about our processing of your Personal Data:

Right to Withdraw Consent:

You have the right to withdraw consent to the processing of your health data at any time. Please note that the withdrawal of your consent shall not affect the lawfulness of processing based on consent before its withdrawal.

Right to be Informed:

You have the right to the information set out in this Notice: the purpose of the processing; the categories of Personal Data concerned, parties with whom the Personal Data is shared; what the source of the Personal Data was and for how long the Personal Data will be stored.

Right of Access:

You are entitled to ascertain what type of Personal Data we hold about you and what we do with that information.  You are also entitled to receive a copy of this information.

Right to Rectification:

You have a right to have any inaccurate Personal Data which we hold about you updated or corrected.

Right to Restrict Use:

You have a right to stop us from using your Personal Data in certain cases, including if you believe that the Personal Data we hold about you is inaccurate or our use of your information is unlawful.  If you validly exercise this right, we will store your Personal Data and will not carry out any other processing until the issue is resolved.

Right to Erasure:

In certain circumstances, you may also have your Personal Data deleted and we do not have any overriding reason to process your Personal Data or if we no longer require your Personal Data for the purposes set out in this notice.

Right to Object:

Where we rely on a public and/or legitimate interest to use your Personal Data, you have a right to object to this use.  We will desist from processing your Personal Data unless we can demonstrate overriding legitimate grounds for the continued processing of your Personal Data.

Right to Object to Automated Decision-Making, including Profiling

You have a right not to be subject to a decision based solely on automated processing, including profiling, which produces legal effects concerning you or similarly significantly affects you. We may not be able to comply with this request where the processing is necessary to enter or perform our contract with you or where you explicitly consent to this. However, you are entitled to have a person from our team review the decision so that you can query it and set out your point of view to us.

You can exercise any of these rights by submitting a written request to: DPO@sublimitytherapeutics.com.

We will provide you with information on any action taken upon your request in relation to any of these rights without undue delay and at the latest within one month of receiving your request. We may extend this up to three months if necessary, however we will inform you if this arises. Please note that we may ask you to verify your identity when you seek to exercise any of your data protection rights.

You also have the right to lodge a complaint and to take a claim with the Data Protection Commission. For further information see www.dataprotection.ie.

  1. CHANGES TO THIS NOTICE & QUESTIONS

This notice may be amended on occasion, in whole or part, at our sole discretion. Any changes will be effective immediately upon communicating the revised notice to you either by email.

If you have any questions, comments or concerns about the way your Personal Data are being used or processed, please submit your question, comment or concern in writing to request to DPO@sublimitytherapeutics.com