Privacy Statement

Thank you for visiting www.ptcbio.jp (the “Site”) which is operated by PTC Therapeutics KK [PMO Nihonbashi-Honcho, Chuo-ku, Tokyo 103-0023], Japan, Phone: +81-3- 6810-8828  (“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 on this Site. We are committed to respecting and protecting your privacy. 

This site is intended for residents of Japan. We will continue to live up to your trust and expectations. Regarding the handling of personal information, our company will act in accordance with the following sections, unless otherwise specified in the Personal Information Protection Act.

Please read this Privacy Statement carefully in order to understand our views and practices regarding your personal data and how we will treat it. This Privacy Statement is also a part of our Terms of Use (the “Terms”) for the Site.

By using this Site you acknowledge 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, or the Terms, please do not use this Site. Use of the Site constitutes acknowledgement of this Privacy Statement.

Because of our commitment to the protection of your personal data, we evaluate our privacy policies and procedures to implement improvements and refinements from time to time. We encourage you to check the Site frequently to see the current Privacy Statement and Terms in effect and any changes that may have been made to them. If we make material changes to this Privacy Statement, we will notify you by means of a prominent notice on this Site prior to the change becoming effective.

COLLECTION OF PERSONAL INFORMATION

If we receive personal information directly from the person in question, we will inform you of the purpose of use of the information at the time of providing it. In addition, when collecting personal information by other methods, we will collect it to the extent necessary to achieve the purpose of use announced in advance on our website. If we acquire personal information for a purpose that has not been announced in advance, we will promptly notify the person or publicly announce the purpose of use.

USE AND PROCESSING OF PERSOANAL INFORMATION

Our company will use the collected personal information for the purposes of use that we have notified in advance or that have been announced on our website, and will not use it to achieve these purposes without the consent of the individual. We will Do not use it beyond the necessary range. Furthermore, personal information will not be used in any manner that may encourage or induce illegal or unjust acts.

When entrusting the handling of personal information to a third party, we will select a party that can appropriately manage personal information, and make arrangements with the party to ensure the protection of personal information. We will adequately protect personal information by appropriately supervising and managing the handling of information. If personal information is to be jointly used with a third party, we will notify the person in advance of the matters stipulated by law, such as the scope of the joint users, or publish them on our website.

Personal information that we collect will be processed in Japan or other countries (including countries outside the United States or the EU) where we, our affiliated companies, or third parties affiliated with us are located. Depending on the country, standards regarding information protection may differ from those in Japan. In accordance with industry standards, we will take reasonable steps to ensure that personal information is treated in accordance with this Privacy Policy.

When our company receives personal information from or collects personal information from outside Japan, we will comply with the personal information protection laws applicable in that country regarding the processing of such personal information.

PURPOSE AND USE OF PERSONAL INFORMATION

The purposes for which our company uses personal information are as follows.

Personal information regarding doctors, dentists, pharmacists, pharmacies/pharmacies, and other medical professionals

• Providing, collecting, examining, and transmitting information regarding the proper use of pharmaceuticals, medical devices, reagents, and other products and products handled by our company (hereinafter referred to as “pharmaceuticals, etc.”)
• Provision, collection, examination, and communication of information regarding the quality, safety, or effectiveness of pharmaceuticals, etc.
• Provision, collection, consideration, and communication of medical-related information
• Notification of side effects, accidents, recalls, etc.
• Review, investigation and response to inquiries, communications, etc.
• Understanding the delivery destination of specific biological products and establishing a communication network
• Investigation and understanding of delivery destinations, usage conditions, user needs, etc. of pharmaceuticals, etc.
• Considering, requesting, and implementing clinical trials, post-marketing surveillance, epidemiological surveys, and other medical/pharmaceutical surveys and research (including future ones)
• Request and management of lectures, advisory services, etc.
• Information disclosure based on “Guidelines for transparency of relationships between corporate activities and medical institutions, etc.”
• Membership authentication and membership management for internet sites for medical professionals
• Provision, collection, consideration, and communication of information for business start-up support, management support, medical cooperation support, etc.
• Complaint handling regarding pharmaceuticals, etc. and services
• Fostering good communication
• Notifications/reports to government offices, public institutions, etc.
• Administrative communication regarding the above

Personal information related to persons belonging to companies that sell wholesalers of pharmaceutical products, etc.

• Collaboration for efficient promotion of pharmaceutical products, etc.
• Provision, collection, examination, and communication of information regarding the quality, safety, or effectiveness of pharmaceuticals, etc.
• Collaboration in the occurrence of side effects, accidents, recalls, etc.
• Investigation and understanding of delivery destinations, usage conditions, user needs, etc. of pharmaceuticals, etc.
• Fostering good communication
• Administrative communication regarding the above

Personal information regarding scientific researchers in medicine, pharmacy, etc.

• Provision, collection, examination, and transmission of information and academic information regarding the proper use of research reagents
• Investigation and understanding of research reagent delivery destinations, usage status, user needs, etc.
• Surveys and research in the field of biology, including medicine and pharmacy
• Membership authentication and membership management for internet sites for scientific researchers
• Receiving inquiries and handling complaints regarding pharmaceuticals, etc. and services
• Fostering good communication
• Administrative communication regarding the above

Personal information regarding people who belong to patient organizations (patient associations and patient support organizations) and patients

• Provision, collection, consideration, and communication of medical-related information
• Notification of side effects, accidents, recalls, etc.
• Review, investigation and response to inquiries, communications, etc.
• Request and management of lectures, advisory services, etc.
• Information disclosure based on the “Guidelines for Transparency of Relationships between Corporate Activities and Patient Organizations”
• Complaint handling regarding pharmaceuticals, etc. and services
• Installation and maintenance of equipment used in home medical care, inquiries and explanations
• Patient group support
• Information on medical-related seminars, etc. for the general public, including patients and clinical trial participants (subjects)
• Fostering good communication
• Notifications/reports to government offices, public institutions, etc.
• Administrative communication regarding the above

Information regarding clinical trial participants and other research subjects

• Contact regarding compensation for health damage caused by clinical trials and handling of compensation payments, etc.
  *Information regarding clinical trial participants is normally treated by medical institutions, etc., so that specific individuals cannot be identified, such as anonymization. However, in exceptional cases, it may be collected as personal information.
• Human genome/gene analysis research
  *Although we do not normally collect information that can immediately identify individuals, such as names, we may collect genomic data that corresponds to personal identification codes.
• Notifications/reports to government offices, public institutions, etc.
• Utilization of information obtained from post-marketing surveillance for regulatory reporting and academic research
  *Results and information obtained from post-marketing surveillance are submitted to national regulatory authorities for drug reexamination and re-evaluation. Summaries of the results of post-marketing surveys may be published at academic conferences or in medical journals, but such data do not include any information that would allow the participants of the post-marketing surveys to be identified. … The privacy of post-marketing survey participants will be protected. The personal information of post-marketing survey participants will not be identified in any reports or publications.
• Administrative communications related to the above

Personal information related to those who use the Public Relations Department and other contact points of our company

• Examination, investigation and response to consultations, inquiries, communications, etc.
• Reporting and contacting manufacturers, sellers, etc. of pharmaceutical products, etc.
• Notifications/reports to government offices, public institutions, etc.
• Administrative communications related to the above

Personal information of people who belong to outsourcing companies, consultants, and other business partners (including people who belong to our company’s affiliated organizations and related public institutions)

• Communication, consultation (discussion), confirmation, and request (instruction) regarding implementation outsourcing (request) work
• Efficient execution of commissioned (requested) work
• Understand qualifications, job skills, experience, etc.
• Fostering good communication
• Notifications/reports to government offices, public institutions, etc.
• Administrative communications related to the above

Personal information regarding media personnel, securities analysts, investors, etc.

• Distribution of our company information
• Information on various events
• Understanding and analyzing stakeholder needs and planning based on them
• Fostering good communication
• Administrative communications related to the above

Personal information regarding employment applicants

• Consideration/decision of acceptance/rejection, response to inquiries, etc.
• Verification and analysis of recruitment selection activities and reference for future activities
• Reference for internship implementation and future planning and management
• Administrative communications related to the above

Personal information regarding executives, employees (including retirees) and their families

• Business communication network development and other organizational management
• Employment management, personnel evaluations, calculation and payment of salaries, bonuses, retirement benefits, etc., personnel and labor management, human resource allocation, human resource development, welfare programs, safety and health planning and management, etc.
• Contacting labor unions, mutual aid associations, health insurance associations, affiliated companies, etc.
• Contacting the person or family in an emergency
• Understand training history, internal test results, etc.
• Providing your MR training history to the MR Education Center
• Contacting outsourcing companies, consulting companies, insurance companies, etc.
• Presentation of resume outside the company
• Publication on printed matter, etc. distributed and provided inside and outside the company
• Notifications/reports to government offices, public institutions, etc.
• Post-retirement procedures/communications

DATA SHARING WITH THIRD PARTIES

Our company will not provide personal information to third parties except in the following cases.

1. When consent is obtained in advance from the person concerned.
2. When provided based on laws and regulations.
3. When it is necessary to protect a person’s life, body, or property, and it is difficult to obtain the consent of the person.
4. When it is particularly necessary to improve public health or promote the healthy upbringing of children, and it is difficult to obtain the consent of the individual.
5. When it is necessary to cooperate with a national organization, local government, or a person entrusted by them in carrying out the affairs stipulated by laws and regulations, and with the consent of the person concerned, we can assist in carrying out the affairs.
6. When there is a risk of hindrance.
7. In other cases permitted by law.

When providing personal information to a foreign third party, our company will comply with the provisions of the Personal Information Protection Law and provide the information stipulated in the same law before obtaining the consent of the person concerned.

HOW TO REQUEST DISCLOSURE OF PERSONAL INFORMATION etc.

1. Regarding various requests regarding personal information from individuals

Our company will respond appropriately to requests regarding personal information from individuals as follows.

1) Disclosure

When we receive a request via email dataprivacy@ptcbio.com from an individual to disclose personal information (including records provided to a third party), we will respond to the request by following the prescribed procedures, excluding the following cases or exceptions stipulated in the Personal Information Protection Act. We will confirm that there is a problem and respond promptly.

1. When there is a risk of harming the life, body, property, or other rights and interests of the person or a third party.
2. When there is a risk of significantly hindering the proper implementation of our business.
3. When there is a violation of other laws and regulations. 4. When
   other laws and regulations require separate disclosure procedures.
4. When the identity of the individual cannot be confirmed.

2) Notification of purpose of use

When we receive a request from an individual to notify them of the purpose of use of their personal information, we will promptly respond after confirming the identity of the individual through the prescribed procedures.

Please note that in some cases, we may not be able to respond to your request for notification of the purpose of use.

3) Correction/addition/deletion

When we receive a request from an individual to correct, add, or delete personal information, we will promptly respond after confirming the identity of the individual through the prescribed procedures. Please note that in some cases, we may not be able to respond to requests for corrections, additions, or deletions.

4) Suspension of use/deletion

When we receive a request from an individual for suspension of use or deletion of personal information, we will respond promptly after confirming the identity of the individual through the prescribed procedures.

Please note that in some cases, we may not be able to respond to your request for suspension of use or deletion.

2. How to claim

We may ask for verification of your identity if you request disclosure 

• i) If the request is made by the person in question, subject will need to provide copies of two or more of the following official certificates
  • Driver’s license
  • Health insurance card
  • Personal number card (do not send the side with the personal number written on it)
  • Basic resident register with photo 
  • Passport
  • Alien registration certificate
  • Pension book
• ii) In the case of a request by a representative. Requestor will need to provide two or more copies of the power of attorney from among the above official certificates for each of the principal and the agent.
  In order to record the contact with the person in question, identity verification documents will not be returned, but will be kept in strict custody at our company.

3. Response to your request

When disclosing personal information, we will, in principle, do so in the manner requested by the requestor.

We will contact you within the following number of days, counting from the day after we receive your invoice. (However, please note that responses may be delayed due to unavoidable reasons.)

Within 14 days (disclosure/notification of purpose of use)
Within 30 days (correction/addition/deletion/suspension of use/deletion)

SPECIFIC PERSONAL INFORMATION

Our company deeply believes in the importance of protecting individual numbers and specific personal information (“specific personal information, etc.”) based on the “Act on the Use of Numbers to Identify Specific Individuals in Administrative Procedures” (“Numbers Act”). We will comply with the Number Act and other related laws and guidelines, strive to properly handle and safely manage specific personal information, and make a company-wide effort to live up to the trust and expectations of society.

Our company will act in accordance with the following sections regarding the handling of specific personal information, etc.

1. Regarding collection of specific personal information, etc.

Our company acquires specific personal information, etc. by lawful and fair methods.

2. Regarding the use of specific personal information, etc.

Our company uses collected specific personal information, etc. for the purposes of use notified in advance or announced on our website in advance, and does not use it beyond the scope necessary to achieve these purposes of use. I don’t. In addition, we will comply with the laws and regulations of the relevant countries when using the site.

When entrusting the handling of specific personal information, etc. to a third party, we will select a party who can appropriately manage specific personal information, etc. as the entrusted party, and make necessary arrangements with the entrusted party for the protection of specific personal information, etc. We will fully protect specific personal information, etc. by agreeing on matters and appropriately supervising and managing the handling of specific personal information, etc. In addition, subcontracting (including subsequent entrustments) will only be carried out with prior approval from our company, and subcontractors (including subsequent subcontractors) may also be entrusted. We will carry out the same supervision and management as before.

3. Regarding provision of specific personal information, etc. to third parties

Our company will not provide specific personal information, etc. to third parties, except in cases where provision of specific personal information, etc. is permitted as stipulated in the Number Act.

4. Regarding safety management of specific personal information, etc.

Our company maintains the accuracy and safely manages specific personal information, etc. (“specific personal information file”) that is made easily searchable through databases, etc. In addition, we will take physical and technical security control measures to prevent loss, destruction, falsification, leakage outside the company, and unauthorized access from outside the company.

5. Regarding notification of purpose of use of specific personal data, disclosure, correction, etc., suspension of use, etc., and suspension of provision to third parties

If we receive a request for notification of the purpose of use, disclosure, correction, etc., suspension of use, or suspension of provision to a third party of specific personal data held by our company, we will confirm the identity of the individual and respond accordingly. We will take necessary measures within a reasonable range.

ORGANIZATION AND STRUCTURE

Our company will appoint a company-wide specific personal information officer (Data Protection Officer), who will appropriately supervise employees who handle specific personal information, etc., and provide education and training to ensure the protection of specific personal information, etc.

INQUIRIES

If you have any inquiries or complaints regarding the handling of specific personal information, please contact the contact dataprivacy@ptcbio.com

RETENTION

In the context of each activity involving collection, processing or storage of personal information, we will keep your personal information for no longer than the relevant period necessary for the specific processing purpose(s) for which your information was collected and any other permitted associated purpose. Such retention period will be shared, as applicable, in the documentation relevant to such activity. Information may be retained for a longer duration where applicable laws or regulations require or allow PTC to do so. Your information that is no longer needed is either irreversibly anonymized (and the anonymized information may be retained for longer periods) or securely destroyed.

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 Site, we may place a “cookie” in order to improve your experience by recognizing you when you visit the Site, 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 Site. 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

In order to handle personal information, etc. more appropriately, our company will review this policy from time to time and continuously improve it.

If you have any questions, comments or suggestions about this Privacy Statement or our privacy practices, please contact us at: [ PTC Therapeutics KK, PMO Nihonbashi-Honcho, Chuo-ku, Tokyo 103-0023, Japan] dataprivacy@ptcbio.com 

DATE: February 21, 2024