The road less travelled:
Finding a path to diagnosis in rare neurotransmitter disorders


PRIVACY STATEMENT

Thank you for visiting the AADC Insights website (the “Website”), operated by PTC Therapeutics GT, Inc. located at 100 Corporate Court, South Plainfield, NJ 07080, United States, Phone: +1 908 222 7000, www.ptcbio.com, (together with its affiliates, “we”, “us”, “PTC”). PTC is responsible, as the data controller, for the collection and use of your personal data as collected and/or provided by you via the registration form on this Website. We are committed to respecting and protecting your privacy.

The content of this Website is addressed only to healthcare professionals residing outside the United States, in particular, paediatric neurologists and paediatricians. A registration form is available to subscribe to materials, events, activities, information (both disease awareness and product related if allowed by local law) available through this Website.

This Website is designed to educate healthcare professionals on the pathophysiology and epidemiology of neurotransmitter disorders, including Aromatic L-amino Acid Decarboxylase (AADC) deficiency. This Website will discuss referral pathways, testing opportunities and approaches, diagnosis and the current management of patients with these conditions. This Website will also include, but is not limited to, educational content through online videos, presentations, webinars, registration opportunities for face-to-face meetings, case study presentations and news articles and features.

This Privacy Statement applies to information collection and use while you are registering and using this Website. Please read this Privacy Statement carefully in order to understand our views and practices regarding your personal data and how we will treat it.

By registering to this Website, you explicitly consent to the use of your personal data by us as explained in this Privacy Statement. If you do not agree with the use of personal data as set out in this Privacy Statement, please do not use this Site any further. Use of this Website constitutes acceptance of this Privacy Statement.

Personal Data Collected:
To access this Website you need to fill in the online registration form and share with us some contact details for the purpose of identification and administration of this Website and your subscription to the different options proposed. We collect and use two types of information, that we obtain from you online while you are applying and navigating through our Website.

  • Personal Information that you voluntarily provide to us via the following ways:

Registration Form: When you are registering to this Website, and the subscription options are proposed, your name and contact information will be collected and used in order to process and manage your application, as well as to confirm your registration to this Website. Such information includes your first and last name, the center/hospital name, your business email address, your specialty and your country of residence. Upon your consent, we may also use your personal information to send you educational and promotional material and newsletters (subject to any applicable laws and regulations for healthcare professionals in your country) about our websites, meetings, events and activities, including information about other areas of interest and services not specifically relating to neurotransmitter disorders. Providing your personal data and your consent is voluntary; you have the right to withdraw your consent at any time, without giving any reasons. For more information on how to exercise your privacy rights please see the respective section below “Your Privacy Rights”.

Quality and Safety (Adverse Event) Reporting: This Website does not promote PTC’s products. It offers only informational material on the diagnosis and management of Aromatic L-amino Acid Decarboxylase (AADC) Deficiency. If you wish to submit a quality complaint or an adverse event report for one of our products, you may send an email to pharmacovigilance@ptcbio.com, and we will collect and process your personal information (see above), with the scope to handle your complaint and/or adverse event report and to follow up with you regarding an unexpected event involving use of our product. We will also further store and process such reports in order to comply with applicable quality and safety reporting laws and regulations.

  • Digital Information (non-identifiable data)

When you visit our Website and submit your registration form, we automatically collect basic technical information through our automatic data collection tools, which may include cookies and other commonly used technologies. These tools collect certain standard information that your browser sends to the Website such as your browser type and language, access times, and the address of the site from which you came to the Website. They may also collect information about your Internet Protocol (IP) address or click stream data within our Website (i.e. the pages you view, the links you click, and other actions taken in connection with the Website). The information we collect through cookies and other means does not individually identify you. This information helps us improve the functionality of the Website and make your activities more convenient and efficient. More detailed information about use of cookies by PTC can be found at our Cookies Statement.

How We Use Personal Data:
PTC will only process your personal information for purposes permitted by applicable laws, which may vary depending on where you live and where PTC operates as well as on the actual processing activities. The purposes of the data processing activities may include:

  • to contact you and respond to any inquiries related to your participation to this Website;
  • to perform the HCP verification process and confirm which verified HCPs can access this Website;
  • for business administration, including statistical analysis;
  • to personalize your visit to the Website, assist you while you use the Website;
  • to provide you with information regarding health topics or disease states and any other related scientific and educational updates;
  • to provide you with promotional information related to PTC products and services as applicable and subject to local law;
  • to improve the performance of the Website by helping us understand who uses the Website and how, and better understand the needs and interests of our visitors and users;
  • for collaboration and research purposes in order to make more informed and objective decisions when identifying, engaging with healthcare professionals and key opinion leaders and managing the collaboration relationship with healthcare professionals; and
  • to comply with applicable laws, regulations or codes of practice.

Legal Basis of Processing:
PTC processes personal information based on the following legal grounds:

  • Where you have provided your consent. Please note that when requested, you are not obliged to provide your consent; your consent is provided on a purely voluntarily basis. If you choose to refuse to provide it, this will only mean that we will not be able to process information in order to manage access to this Website and send you any future communications;
  • Where the processing is necessary for compliance with a legal obligation to which we are subject;

Sharing Information:
We may disclose your personal information to certain third parties listed below, including third parties who provide us with various business services.  We will not sell or otherwise disclose your Personal Information without your consent, except where such disclosure is reasonably necessary for normal business operations and such disclosure is in accordance with all applicable data protection and privacy laws.

PTC Affiliates
PTC and its subsidiary companies may also have access to personal data, provided to us by you including through or in connection with this Website for the purposes set out in this Privacy Statement.

Third Parties/Service Providers
We may also disclose your personal information to third-party service providers who provide services to PTC, such as but not limited to: design, set up and delivery of integrated online campaigns associated with this Website, website hosting, admin access to CRM and CMS platforms, professional services, including information technology services and related infrastructure, customer service, design and delivery paid email and direct mail campaign, as well as social media campaigns with access to PTC’s social media accounts, auditing and other similar services as well as to business partners and collaborators.
We utilize the data processor noted below, who acts on our behalf, and provides the required processes in respect of the Website:

METHOD
MERCURY HOUSE
117 WATERLOO ROAD
LONDON, SE1 8UL
United Kingdom
Privacy Policy: https://wearemethod.io/privacy-policy/
METHOD is a UK based company, which will design integrated online campaigns associated with this Website, by establishing the necessary platform, channels and system integrations to deliver the campaign.

Law Enforcement
In certain circumstances we may be called upon to share your personal data as required or permitted by law to comply with a subpoena or similar legal process or government request, or when we believe in good faith that disclosure is legally required or otherwise necessary to protect our rights and property, or the rights, property or safety of others, including to advisers, law enforcement, judicial and regulatory authorities. We may also transfer your personal data to a third party that acquires all or part of our assets or shares, or that succeeds us in carrying on all or a part of our business, whether by merger, acquisition, reorganization or otherwise.

Regulatory Authorities
In cases where you wish to report any suspected adverse reactions, we may use the personal information you provide as necessary to submit complaint or adverse event reports to local and international health or pharmaceutical regulators, and as otherwise required by law.

Data Transfers:
As a global company, PTC operates in numerous countries. Personal information about you will be accessible to PTC’s headquarters in the United States and to PTC affiliates and selected vendors and partners globally. In case PTC processes personal information in countries that may not provide the same level of data protection as your residency country, PTC will implement reasonable and appropriate legal as well as technical and organizational security measures to ensure the security of the processing and in particular to protect your personal information from unauthorized access, use or disclosure including, but not limited to, maintaining binding contractual arrangements with all third parties processing personal information of individuals, for and on behalf of PTC, as well as executing, where necessary, adequate data transfer mechanisms, with the aim to achieve an adequate level of data protection of your personal information and to ensure the security of the processing.

For residents of EEA – whenever we transfer your information outside of the European Economic Area, we will either ask for your explicit consent or take any and all necessary steps to ensure that adequate safeguards are put in place to protect your information (unless we are permitted under applicable laws to make such transfers without additional formalities e.g. where the recipient country is considered an adequate destination). Such safeguards include the use of European Commission approved standard contractual clauses.

Your Privacy Rights:
For residents of the EEA - you have the right to request from us to:

  1. provide you with further details on the processing of your personal information;
  2. provide you access to your personal data that we hold about you and copies thereof;
  3. update any inaccuracies in the personal information we hold that is demonstrated to be inaccurate or incomplete;
  4. delete any personal information the we no longer have a lawful basis to use;
  5. provide you or a third party, with a copy of your data in a digital format (data portability);
  6. stop a particular processing when you withdraw your consent;
  7. restrict certain aspects of the processing of your information.

In case we do not handle your request timely or if you are not satisfied with our response to any exercise of these rights, you are entitled to lodge a complaint with the competent supervisory authority of your place of residence. Further information and contact details of the European competent supervisory authorities can be found here: https://edpb.europa.eu/about-edpb/board/members_en.

If you wish to exercise one of the above-mentioned rights, please send us your request in writing to the following address: PTC Therapeutics International Limited, located at 5th Floor, 3 Grand Canal Plaza, Grand Canal Street Upper, Dublin 4, Ireland or send us your request via email to dataprivacy@ptcbio.com

Security:
The security of your personal data is important to us. All information you provide to us is stored on secure servers and accessed and used subject to our security policies and standards. We take reasonable steps, consistent with generally accepted industry standards, including technical, administrative and physical safeguards to protect the personal data submitted to us from loss, misuses and unauthorized access, disclosure, alteration and destruction. However, no method of security or transmission over the Internet is entirely secure. You should always use caution when transmitting personal data over the Internet.

Access to your personal information is limited to a restricted number of PTC employees whose duties reasonably require such information and third parties with whom PTC contracts to carry out business activities on its behalf. Our employees have been trained on the importance of privacy and how to handle and manage personal information appropriately and securely.

Data Retention:
We will retain your personal information for three (3) years for the processing purpose(s) for which your information was collected and any other permitted associated purpose. After this period of time, the personal information will be deleted unless you consent to further storage.

Cookies:
Cookies are small, sometimes encrypted text files that are stored on computer hard drives by websites that you visit. They are used to help users navigate on websites efficiently as well as to provide information to the owner of the website. When you visit the Website, we may place a “cookie” in order to improve your experience by recognizing you when you visit the Website, such as by assigning a session ID and to deliver content specific to your interests.

You have a variety of tools to control cookies and similar technologies, including browser controls to block and delete cookies. If you elect to block cookies, please note that you may not be able to take full advantage of the features and functions of the Website. Please look at your particular browser for instructions on these functions. You may also wish to refer to http://www.allaboutcookies.org/manage-cookies/index.html.

To find out more about cookies, including how to see what cookies have been set and how to manage and delete them, please read our Cookies Statement.

Contact Us:
If you have any questions, comments or suggestions about this Privacy Statement or our privacy practices, please contact us: dataprivacy@ptcbio.com