Privacy Notice – Spark Therapeutics

Users of Online Services, Visitors to Our Websites and Physical Locations, and Senders of Inquiries

We may process your Personal Data when you: (1) visit our websites and our physical locations; (2) submit inquiries to us both online (e.g., via email) or offline (e.g., by written letters); (3) sign up for our newsletters or other informational or marketing materials; and/or (4) register for, visit, or use our online Products and Services.

Examples of the types of data we process (Personal Data that may be considered sensitive is noted with a “*”)

Identity and contact information, such as:

first and last name or unique pseudonym
honorifics and titles, preferred form of address
email address
postal address
phone number
username or code and password
contact information for related persons, such as authorized users of your account
customer number
company ID number such as account number

Other personal information, such as:

age
gender
marital status
disability
date of birth

Visual and audio information, such as:

still images
video (including via CCTV)
recordings of your calls with our customer service representatives
voicemails

Technical Information, such as:

Internet Protocol (IP) addresses (which may identify your general geographic location or company)
browser type and browser language
device type
advertising IDs associated with your device (such as Apple’s Identifier for Advertising (IDFA) or Android’s Advertising ID (AAID))
date and time you use our Products and Services
Uniform Resource Locators, or URLs (i.e., website addresses) visited prior to arriving and after leaving our Products and Services
activity on our Products and Services and referring websites or applications
data collected from cookies or other similar technologies***

De-identified Data:

De-identified data is data for which your individual personal characteristics have been removed such that you are not identified and the information is no longer considered Personal Data under data protection laws****

Where do we get the data?

Why do we process the data? (Purposes for the processing of Personal Data that may be considered sensitive are noted with a “*”)

Who receives the data? (Parties that may receive Personal Data that may be considered sensitive are noted with a “*”)

Patients Applying to or Enrolled In Patient Support Programs

We may process your Personal Data when you are applying to or enrolled in patient support programs.

Examples of the types of data we process (Personal Data that may be considered sensitive is noted with a “*”)

Identity and contact information, such as:

first and last name or unique pseudonym
honorifics and titles, preferred form of address
email address
postal address
phone number
contact information for related persons, such as alternative contact
patient ID number

Other personal information, such as:

age
gender
preferred language
marital status
disability
ethnicity*
date of birth
written signature on a patient consent form or program enrolment form

Visual and audio information, such as:

pictures and videos of treatment activities*

Technical Information, such as:

Internet Protocol (IP) addresses (which may identify your general geographic location or company)
browser type and browser language
device type
advertising IDs associated with your device (such as Apple’s Identifier for Advertising (IDFA) or Android’s Advertising ID (AAID))
date and time you use our Products and Services
Uniform Resource Locators, or URLs (i.e., website addresses) visited prior to arriving and after leaving our Products and Services
activity on our Products and Services and referring websites or applications
data collected from cookies or other similar technologies***
smart device records
IoT products

Information regarding your treatment, such as:

genetic information*
identification of pathologies/diseases*
areas of interest in medical research*
treatment dates*
medical history and treatment information*
patient-reported outcome measures (e.g., responses to questionnaires and surveys)*
X-rays, magnetic resonance imaging, and medical scans*
user activity
therapy completion and use details*
drug allergies*
prescriptions and dosing*
health values and sensor readings data, such as steps taken, blood glucose levels, heart rate, and blood pressure*
health insurance company
insurance account number
information on payment for health care services*

Commercial and financial information, such as:

Products and Services purchased, obtained, or considered

De-identified Data:

De-identified data is data for which your individual personal characteristics have been removed such that you are not identified and the information is no longer considered Personal Data under data protection laws****

Where do we get the data?

Why do we process the data? (Purposes for the processing of Personal Data that may be considered sensitive are noted with a “*”)

Who receives the data? (Parties that may receive Personal Data that may be considered sensitive are noted with a “*”)

Healthcare Providers

We may process your Personal Data when you are a Healthcare Provider who is a current or prospective Spark customer, uses Spark Products and Services, or treats patients with Spark Products and Services, including use of Spark’s online portals.

Examples of the types of data we process (Personal Data that may be considered sensitive is noted with a “*”)

Identity and contact information, such as:

first and last name or unique pseudonym
honorifics and titles, preferred form of address
company/employer
email address
postal address
phone number
username or code and password
contact information for related persons, such as authorized users of your account
customer number
company ID number such as account number
records of collaborations with Spark, such as participation on an advisory board commissioned by Spark

Other personal information, such as:

age
gender
marital status
disability
TIN*
date of birth

Technical Information, such as:

Internet Protocol (IP) addresses (which may identify your general geographic location or company)
browser type and browser language
device type
advertising IDs associated with your device (such as Apple’s Identifier for Advertising (IDFA) or Android’s Advertising ID (AAID))
date and time you use our Products and Services
Uniform Resource Locators, or URLs (i.e., website addresses) visited prior to arriving and after leaving our Products and Services
activity on our Products and Services and referring websites or applications
data collected from cookies or other similar technologies***

Commercial and financial information, such as:

Products and Services purchased, obtained, or considered
bank account number and details (if you use automatic payments) *
request documentation
customer service records
financial transaction history
financial account number*

Professional and educational information, such as:

job title or position
employer
working location
National Provider Identifier number
state medical license number
work skills
employment history
graduate degrees
certifications
specialized training
responses to surveys and questionnaires
enrolment history for our education and training events

De-identified Data:

De-identified data is data for which your individual personal characteristics have been removed such that you are not identified and the information is no longer considered Personal Data under data protection laws****

Where do we get the data?

Why do we process the data? (Purposes for the processing of Personal Data that may be considered sensitive are noted with a “*”)

Who receives the data? (Parties that may receive Personal Data that may be considered sensitive are noted with a “*”)

Patients and Users of Medical Products

We may process your Personal Data when you are the existing or prospective patient of a Healthcare Provider who is a Spark customer and/or when you receive or use Spark medical products (including, where applicable, mobile apps).

Examples of the types of data we process (Personal Data that may be considered sensitive is noted with a “*”)

Identity and contact information, such as:

first and last name or unique pseudonym
honorifics and titles, preferred form of address
email address
postal address
phone number
username or code and password
contact information for related persons, such as authorized users of your account
customer number
company ID number such as account number

Other personal information, such as:

age
gender
marital status
disability
ethnicity*
date of birth
written signature on a patient consent form or program enrolment form

Visual and audio information, such as:

pictures and videos of treatment activities*

Technical Information, such as:

Internet Protocol (IP) addresses (which may identify your general geographic location or company)
browser type and browser language
device type
advertising IDs associated with your device (such as Apple’s Identifier for Advertising (IDFA) or Android’s Advertising ID (AAID))
date and time you use our Products and Services
Uniform Resource Locators, or URLs (i.e., website addresses) visited prior to arriving and after leaving our Products and Services
activity on our Products and Services and referring websites or applications
data collected from cookies or other similar technologies***
smart device records
IoT products

Information regarding your treatment, such as:

genetic information*
blood and tissue samples*
identification of pathologies/diseases*
areas of interest in medical research
treatment dates*
medical history and treatment information*
patient-reported outcome measures (e.g., responses to questionnaires and surveys)*
X-rays, magnetic resonance imaging, and medical scans*
user activity
therapy completion and use details*
communications with your Healthcare Provider, including audio and/or video from telehealth sessions*
drug allergies*
prescriptions and dosing*
health values and sensor readings data, such as steps taken, blood glucose levels, heart rate, and blood pressure*
health insurance company
insurance account number
information on payment for health care services*

Commercial and financial information, such as:

Products and Services purchased, obtained, or considered
bank account number and details (if you use automatic payments)
request documentation
customer service records
financial transaction history
financial account number

De-identified Data:

De-identified data is data for which your individual personal characteristics have been removed such that you are not identified and the information is no longer considered Personal Data under data protection laws****

Where do we get the data?

Why do we process the data? (Purposes for the processing of Personal Data that may be considered sensitive are noted with a “*”)

Who receives the data? (Parties that may receive Personal Data that may be considered sensitive are noted with a “*”)

Business Partners and Their Employees, Agents, and Contractors

We may process your Personal Data if you are a current Spark business partner, employee of a Spark business partner, agent or contractor

Examples of the types of data we process (Personal Data that may be considered sensitive is noted with a “*”)

Identity and contact information, such as:

first and last name or unique pseudonym
honorifics and titles, preferred form of address
company/employer
email address
postal address
phone number
username or code and password

Other personal information, such as:

age
gender
disability
social security number*
date of birth

Technical Information, such as:

Internet Protocol (IP) addresses (which may identify your general geographic location or company)
browser type and browser language
device type
advertising IDs associated with your device (such as Apple’s Identifier for Advertising (IDFA) or Android’s Advertising ID (AAID))
date and time you use our Products and Services
Uniform Resource Locators, or URLs (i.e., website addresses) visited prior to arriving and after leaving our Products and Services
activity on our Products and Services and referring websites or applications
data collected from cookies or other similar technologies***

Commercial and financial information, such as:

Products and Services purchased, obtained, or considered
request documentation
customer service records
financial transaction history
financial account number*

De-identified Data:

De-identified data is data for which your individual personal characteristics have been removed such that you are not identified and the information is no longer considered Personal Data under data protection laws****

Where do we get the data?

Why do we process the data? (Purposes for the processing of Personal Data that may be considered sensitive are noted with a “*”)

Who receives the data? (Parties that may receive Personal Data that may be considered sensitive are noted with a “*”)

Attendees and Participants at Events

We may process your Personal Data when you attend or participate in professional and educational events we sponsor or hold.

Examples of the types of data we process (Personal Data that may be considered sensitive is noted with a “*”)

Identity and contact information, such as:

first and last name or unique pseudonym
honorifics and titles, preferred form of address
company/employer
email address
postal address
phone number
username or code and password

Other personal information, such as:

age
gender
marital status
disability
date of birth

Visual and audio information, such as:

still images
video (including via CCTV)

Technical Information, such as:

Internet Protocol (IP) addresses (which may identify your general geographic location or company)
browser type and browser language
device type
advertising IDs associated with your device (such as Apple’s Identifier for Advertising (IDFA) or Android’s Advertising ID (AAID))
date and time you use our Products and Services
Uniform Resource Locators, or URLs (i.e., website addresses) visited prior to arriving and after leaving our Products and Services
activity on our Products and Services and referring websites or applications
data collected from cookies or other similar technologies***

Professional and educational information, such as:

job title or position
employer
work skills
employment history
graduate degrees
certifications
specialized training
responses to surveys and questionnaires

De-identified Data:

De-identified data is data for which your individual personal characteristics have been removed such that you are not identified and the information is no longer considered Personal Data under data protection laws****

Where do we get the data?

Why do we process the data? (Purposes for the processing of Personal Data that may be considered sensitive are noted with a “*”)

Who receives the data? (Parties that may receive Personal Data that may be considered sensitive are noted with a “*”)

Clinical Investigators and Members of Investigator Teams

We may process your Personal Data if you are an existing or prospective clinical investigator or a member of an investigation team for a clinical study that Spark manages on behalf of a customer.

Examples of the types of data we process (Personal Data that may be considered sensitive is noted with a “*”)

Identity and contact information, such as:

first and last name or unique pseudonym
honorifics and titles, preferred form of address
company/employer
email address
postal address
phone number
username or code and password

Other personal information, such as:

age
gender
marital status
disability
date of birth

Technical Information, such as:

Internet Protocol (IP) addresses (which may identify your general geographic location or company)
browser type and browser language
device type
advertising IDs associated with your device (such as Apple’s Identifier for Advertising (IDFA) or Android’s Advertising ID (AAID))
date and time you use our Products and Services
Uniform Resource Locators, or URLs (i.e., website addresses) visited prior to arriving and after leaving our Products and Services
activity on our Products and Services and referring websites or applications
data collected from cookies or other similar technologies***

Professional and educational information, such as:

job title or position
employer
National Provider Identifier number
state medical license number
work skills
employment history
graduate degrees
certifications
specialized training
responses to surveys and questionnaires
enrolment history for our education

Commercial and financial information, such as:

Products and Services purchased, obtained, or considered
request documentation
customer service records
financial transaction history
financial account number*

De-identified Data:

De-identified data is data for which your individual personal characteristics have been removed such that you are not identified and the information is no longer considered Personal Data under data protection laws****

Where do we get the data?

Why do we process the data? (Purposes for the processing of Personal Data that may be considered sensitive are noted with a “*”)

Who receives the data? (Parties that may receive Personal Data that may be considered sensitive are noted with a “*”)

Clinical Study Candidates

Clinical Study Candidates: We may process your Personal Data when you have been identified as a potential candidate for clinical studies sponsored by us or conducted by us on behalf of a third party.

If you are a participant in a clinical study, clinical trial, or other health-related research, you should receive a separate privacy notice regarding the Personal Data we process for those purposes. That privacy notice—and not this Notice— governs our processing of such Personal Data.

Examples of the types of data we process (Personal Data that may be considered sensitive is noted with a “*”)

Identity and contact information, such as:

first and last name or unique pseudonym
honorifics and titles, preferred form of address
email address
postal address
phone number

Other personal information, such as:

age
gender
marital status
disability
ethnicity*
date of birth
written signature on a patient consent form or program enrolment form

Technical Information, such as:

Internet Protocol (IP) addresses (which may identify your general geographic location or company)
browser type and browser language
device type
advertising IDs associated with your device (such as Apple’s Identifier for Advertising (IDFA) or Android’s Advertising ID (AAID))
date and time you use our Products and Services
Uniform Resource Locators, or URLs (i.e., website addresses) visited prior to arriving and after leaving our Products and Services
activity on our Products and Services and referring websites or applications
data collected from cookies or other similar technologies***

Information regarding your treatment, such as:

identification of pathologies/diseases*
areas of interest in medical research*
treatment dates*
medical history and treatment information*
user activity
therapy completion and use details*
drug allergies*
prescriptions and dosing*
health values and sensor readings data, such as steps taken, blood glucose levels, heart rate, and blood pressure*

De-identified Data:

De-identified data is data for which your individual personal characteristics have been removed such that you are not identified and the information is no longer considered Personal Data under data protection laws****

Where do we get the data?

Why do we process the data? (Purposes for the processing of Personal Data that may be considered sensitive are noted with a “*”)

Who receives the data? (Parties that may receive Personal Data that may be considered sensitive are noted with a “*”)

Employment and Apprenticeship Candidates

We may process your Personal Data when you apply or are a candidate for employment or apprenticeship at Spark.

Examples of the types of data we process (Personal Data that may be considered sensitive is noted with a “*”)

Identity and contact information, such as:

first and last name or unique pseudonym
honorifics and titles, preferred form of address
company/employer
email address
postal address
phone number
username or code and password

Other personal information, such as:

age
gender
marital status
disability
social security number*
date of birth

Technical Information, such as:

Internet Protocol (IP) addresses (which may identify your general geographic location or company)
browser type and browser language
device type
advertising IDs associated with your device (such as Apple’s Identifier for Advertising (IDFA) or Android’s Advertising ID (AAID))
date and time you use our Products and Services
Uniform Resource Locators, or URLs (i.e., website addresses) visited prior to arriving and after leaving our Products and Services
activity on our Products and Services and referring websites or applications
data collected from cookies or other similar technologies***

Professional and educational information, such as:

job title or position
employer
work skills
employment history
graduate degrees
certifications
specialized training
responses to surveys and questionnaires

De-identified Data:

De-identified data is data for which your individual personal characteristics have been removed such that you are not identified and the information is no longer considered Personal Data under data protection laws****

Where do we get the data?

Why do we process the data? (Purposes for the processing of Personal Data that may be considered sensitive are noted with a “*”)

Who receives the data? (Parties that may receive Personal Data that may be considered sensitive are noted with a “*”)

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