1. Identification and contact details of Data Controller

1.1 Who we are

Welcome to the Duchenne Map, a Platform as a Service (PaaS) (hereafter: “the “Duchenne Map”) operated by Stichting Duchenne Data Foundation (hereinafter ‘DDF’ or ‘We’),  with Chamber of Commerce Registration Number no: 64601188 and principal address at Warmoesdreef 10, 4614 HC, Bergen op Zoom, the Netherlands.

1.2 Our responsibilities

DDF is the data controller responsible for the processing of your personal data in relation with Duchenne Map. DDF will process your personal data for allowing registration and use of Duchenne Map, being the legal basis for this processing, the contractual relationship (disregarding the gratuity of the service) and your consent, when processing health-related data. 

We will not share your data with third parties; however, it may be accessed by our service providers where such access is necessary for the provision of the service. You have the right to access, rectify and erase your data, and other rights, as indicated in the Privacy Policy.

1.3 About this Privacy Policy

This Privacy Policy is effective as of (25/5/2020) and will remain in effect except with respect to any changes in its provisions in the future, which will be in effect immediately after being posted on this page.

We reserve the right to update or change our Privacy Policy at any time and you should check this Privacy Policy periodically. Your continued use of the Service after we post any modifications to the Privacy Policy on this page will constitute your acknowledgment of the modifications and your consent to abide and be bound by the modified Privacy Policy.

If we make any material changes to this Privacy Policy, we will notify you either through the Email address you have provided us, or by placing a prominent notice on our website.

2. What kind of information does this Privacy Policy provide?

This policy, will give you information in regard to the Services on:

• What types of personal data we collect;
• How we collect your personal data;
• Why we collect your personal data;
• On what legal basis do we collect your personal data;
• How long do we keep your personal data;
• Your privacy rights;

 

3. Definitions 

“Duchenne Map”: Duchenne Map is a digital platform that aims to connect the DMD patient community to other stakeholders, offer the opportunity to share advice and knowledge, and to empower patients and carers to take control of their care. 

“Registered User”: Any Patient, Carrier or Caregiver, Patient Organisation, Research Organisation, Researcher, Care Center, Healthcare Expert, Company who registers in the Duchenne Map and uses the Services.

“You/Your”: Any user, who visits the DDF Platform and may also refer as Registered User.

“Services”: All services provided to Registered Users in the context of the Duchenne Map based on the user type. 

“Personal Data”: Anything that identifies a living individual, either on its own or when put together with other information. Examples of personal information are name, address, telephone number, national insurance number

“Sensitive Data”: Sensitive details about an individual, which they would not usually want to be widely known without their consent. Examples of sensitive information are a person’s physical or mental health record, genetic or biometric data, racial or ethnic origin, sexuality and political or religious beliefs.

“Health Data”: Any sensitive data about an individual’s past, current and future health status, test, treatments and health care service provision etc in relation to Duchenne Muscular Dystrophy.

“Data Processing”: Any primary or secondary use of personal information performed in the context of the Services including sharing. Data processing may also include Health Data and other special categories of personal data.

“Contact Person”: The physical person that uses the Services on behalf and/or in the name of a Registered User other than an individual.

 

4. What types of Personal Data we collect 

The data we collect depends on the types of Registered Users.  

4.1 Patient, Carrier or Caregiver Data Fields:

4.1.1  Patient, Carrier or Caregiver – Registration: Email address, Address.

• Permission to be contacted by other patients (checkbox)
• Permission to be contacted by Patient Organisations (checkbox)

4.1.2 Patient – Account details: I am an adult patient, carrier or a caregiver (checkbox), Phone, Birthday, Gender, I am affiliated with: a Patient Organisation, Care Center, Healthcare Expert.

4.1.3 Patient – Medical Details: Patient First Name, Patient Last Name, Gender, Birthday. 

4.1.3.1  Disease type (checkbox)

• Duchenne Patient
• Becker Patient
• Duchenne Carrier
• Becker Carrier

4.1.3.2 Ambulation status (checkbox)

• Ambulatory
• Non-ambulatory

4.1.3.3 Use of ventilation (checkbox)

4.1.3.4 Mutation type/exon (checkbox/enter a value between 1 and 79)

• small deletion (S)
• small insertion (S) 
• point mutation (S)
• large deletion (L) 
• large duplication (L)

4.1.3.5 Corticosteroids (checkbox)

• Daily
• Every other day
• Weekend
• Rarely
• Used in the past
• Never used 

4.2 Patient Organisation Data Fields:

4.2.1  Patient Organisation – Registration: Patient Organisation Name, Email address, Address.

4.2.2 Patient Organisation – Account details:  Patient Organisation Name, Website, Social media profiles, Address, Phone. 

4.2.2.1 Contact Person

• First name 
• Last name
• Email address 
• Title
• Phone

4.2.2.2 Add a Team Member

• First name
• Last name
• Patient Organisation Role   (Choose from a drop-down menu e.g. chair, board member, etc)
• Email address
• Phone

4.2.2.3  Number of patients (Duchenne or Becker).

4.2.2.4 Services provided by the Patient Organisation (Choose from a drop-down menu e.g. Social work, Psychology,  etc).

4.2.2.5 My Projects.

4.2.2.6 My Publications.

 

4.3 Research Organisation Data Fields:

4.3.1 Research Organisation – Registration: Research Organisation Name, Email address, Address.

4.3.2 Research Organisation – Account details: Research Organisation Name, Address, Phone,  Website. 

4.3.2.1 Contact Person

• First name 
• Last name
• Email address
• Title
• Phone 

4.3.2.2 Affiliated Researcher

• (Choose from a list of validated Researchers that are connected to your Research
  Organisation or type in the open field).

4.3.2.3 Affiliated Healthcare Expert

• (Choose from a list of validated Healthcare Experts that are connected to your Care Center or type in the open field).

4.3.2.4 Add a new Researcher – Account details

• First name
• Last name
• Address
• Phone
• Title
• Website
• Research type (checkbox)

• • Basic
  • Preclinical
  • Clinical
  • Therapy
  • Device
  • Care 
  • Health Economics
  • Other (open text)

• Interests (Choose from a drop-down menu e.g. gene replacement, exon skipping, etc).

• Specialization (Choose from a drop-down menu e.g. Biologist, Medical, etc).

4.3.2.5 My Clinical Trials.

4.3.2.6 My Projects.

4.3.2.7 My Publications.

4.3.2.8 Investigational Medicinal Product (IMP).

 

4.4 Researcher Data Fields:

4.4.1 Researcher – Registration: Email address, Address. 

4.4.2  Researcher – Account details: 

• First name
• Last name
• Address
• Phone
• Title
• Website
• Research type (checkbox)

• • Basic
  • Preclinical
  • Clinical
  • Therapy
  • Device
  • Care 
  • Health Economics
  • Other (open text)

• Interests (Choose from a drop-down menu e.g. gene replacement, exon skipping, etc).

• Specialization (Choose from a drop-down menu e.g. Biologist, Medical, etc).

4.4.2.1 Affiliated Research Organisation

• (Choose from a list of validated Research Organisations or type in the open field).

4.4.2.2 Affiliated Care Center

• (Choose from a list of validated Care Centers or type in the open field).

4.4.2.3 Affiliated Patient Organisation

•  (Choose from a list of validated Patient Organisations or type in the open field).

 

4.4.2.4 My Clinical Trials.

4.4.2.5  My Projects.

4.4.2.6 My Publications.

4.4.2.7  Investigational Medicinal Product (IMP).

 

4.5 Care Center Data Fields:

4.5.1  Care Center – Registration: Care Center Name, Email address, Address. 

4.5.2 Care Center – Account Details: Care Center Name , Address, Phone, Website. 

4.5.2.1 Contact Person

• First name 
• Last name
• Email address 
• Title
• Phone

4.5.2.2  Duchenne Care Center Certification 

• (CCDC Certification) (checkbox)

4.5.2.3 Member of EURO-NMD ERN (checkbox)

4.5.2.4 Services provided by the Care Center (Choose from a drop-down menu e.g. Audiology, Cardiology,  etc). 

 4.5.2.5 Affiliated Healthcare Expert

• (Choose from a list of validated Healthcare Experts that are connected to your Care Center Organisation or type in the open field ).

4.5.2.6 Affiliated Researcher

• (Choose from a list of validated Researchers that are connected to your Research Organisation or type in the open field). 

4.5.2.7 Add a new Healthcare Expert 

• First name
• Last name
• Email address
• Title
• Address
• Specialties (Choose from a drop-down menu e.g. Audiology, Cardiology, etc).

4.5.2.8 Number of patients (Duchenne or Becker). 

4.5.2.9 Affiliated Patient Organisation 

• (Choose from a list of validated Patient Organisations or type in the open field).

4.5.2.10 Affiliated Research Organisation 

• (Choose from a list of validated Research Organisations or type in the open field).

4.5.2.11 Affiliated Care Center 

• (Choose from a list of validated Care Centers or type in the open field). 

 

4.6 Healthcare Expert Data Fields:

4.6.1 Healthcare Expert – Registration: Email address, Address. 

4.6.2 Healthcare Expert – Account Details: Title, Address, Phone, Website. 

4.6.2.1 Healthcare Experts Specialties (Choose from a drop-down menu e.g. Cardiologist, Developmental pediatrics,  etc)

 

4.6.2.2 Affiliated Care Center 

• (Choose from a list of validated Care Centers or type in the open field). 

 

4.6.2.3 Affiliated Research Organisation 

• (Choose from a list of validated Research Organisations or type in the open field).

 

4.6.2.4 Affiliated Patient Organisation 

• (Choose from a list of validated Patient Organisations or type in the open field).

 

4.6.2.5 My Clinical Trials.

4.6.2.6 My Projects.

4.6.2.7 My Publications.

4.6.2.8 Investigational Medicinal Product (IMP).

 

4.7  Company Data Fields:

4.7.1 Company – Registration: Company name, Email address, Address. 

4.7.2 Company – Account details: Company name, Address, Phone, Website, Social media. 

4.7.2.1 Contact Person

• First name 
• Last name
• Email address 
• Title
• Phone
• Department ((Choose from a drop-down menu e.g. Access, Advocacy,  etc)

4.7.2.2 Add a new Staff Member 

• First name 
• Last name
• Email address 
• Title
• Address
• Department ((Choose from a drop-down menu e.g. Access, Advocacy,  etc)

4.7.2.3 Add a new affiliated Entity

• Type

• National, Regional, Headquarters (Choose from a drop-down menu)

• Name 
• Address
• Phone 
• Website
• Department ((Choose from a drop-down menu e.g. Access, Advocacy,  etc)

 

4.7.2.4 Add a new Staff Member from the Affiliated Entity

• First name 
• Last name
• Email address 
• Title
• Address
• Department ((Choose from a drop-down menu e.g. Access, Advocacy,  etc)

 

4.7.3 My  Clinical Trials. 

4.7.4 My Projects. 

4.7.5 My Publications.

4.7.6 My approved Medicinal Products.

4.7.8 My Investigational Medicinal Products (IMP).

 

5. Where do we get your information from?

5.1 Directly from You upon registration/validation or while using the Duchenne Map.

5.2 The Organisation that you are affiliated with: Patient Organisation, Research Organisation, Care Center, Company.

 

6. Why do we collect Your Personal Data?

6.1 Upon Registration

6.1.1 Full name, and contact info: To know who You are and connect you with other Patients, Patient Organisations, Researchers and Healthcare Expert. You may opt out at all times.

6.1.2 Email address: To verify your account, to send you important Email about relative thematics, and related newsletter subscription. You may opt out at all times.

6.1.3 Date of birth (if applicable): 

6.1.3.1 To identify the age/clinical status ratio;

6.1.3.2 To provide access to the Duchenne Map;

6.1.3.3 To generate user classifications of common standards;

6.1.4 Address:  To identify Registered Users on the map.

6.1.5 Health Data, and related Sensitive Information: To deliver the Services and especially to make the best matches and communication channels among Patients, Patient Organisations, Researchers, and  Healthcare Experts. 

6.2 While you use our services:

6.2.1   Login history and usage data. For security and performance optimization. 

6.2.2 Communication history: For security, performance optimization, archiving and statistical purposes.

6.2.3 Your messages in our contact center. To keep track of potential issues of the Services, to provide assistance if you have a problem, to respond to your message, to keep a log of our communication for security reasons. 

7. Why we collect your data (basic grounds of processing)

7.1 To know you better and provide optimized and customized services for maximum convenience and security.

7.2  Archiving purposes that may facilitate you in future queries. 

7.3 For communication purposes as allowed by law and your expressed preferences. You may opt out at all times.

7.4 To verify and validate your information and all information in the Duchenne Map for maximum data accuracy and safety;

8. Why are we allowed to process your personal data (Legal Bases)?

Under the General Data Protection Regulation (GDPR) most of the Data Processing is carried out under the lawful basis of ‘Public Task’ because the processing is necessary for the performance of a task carried out in the Public Interest [GDPR Art.6.(1)(e)]. This allows us to process your Personal Information because it is necessary for public health purposes, and for the purposes of preventive medicine.

We may  also process Sensitive Data such as your Health Data because it is necessary for the purposes or preventive medicine, medical diagnosis [GDPR Art.9(2)(h)] and/or for scientific research and statistical purposes [GDPR Art.9(2)(j)]

9. Our rules for collecting your data

• We only use the data to provide the Services with respect to your personal data and the applicable regulation;
• We meet the GDPR requirements and in the country where we provide you with a service via our website or our applications;
• We fully explain why we need the data and how we’ll use it (unless we have legitimate reason not to);
• We check and update privacy information on a regular basis (we might also cross-check the data against other database to make sure it’s correct);
• We do not share data with anyone unless we have a legal or legitimate reason, or we have permission from you or if you are a child under 16 from your parents;
• We will never sell your data.

10. We may share your data with 

• Google analytics; 
• Third Parties : In the event we are required to do so we will ensure that we will seek your consent before sharing your personal information with others. If you are unable to consent for any reason we will only share personal information where it is clearly in your best interest to do so or it is required by law.

11. How long do we keep your data

11.1 Registration data: During the term of your registration.

11.2 Usage data: During the term of your registration.

11.3 The criteria used to determine our retention periods include: 

11.3.1 As long as the Duchenne Map is operational and as long as you use our Services and hold an account on the Duchenne Map .

11.3.2 Whether there is a legal obligation to which we are subject (for example, certain laws require us to keep records of your transactions for a certain period of time before we can delete them).

11.3.3 Whether retention is advisable considering our legal position (such as, for statutes of limitations, litigation or regulatory investigations).

11.3.4 In the event you request to delete your data to delete any information concerning you before the set retention periods (when applicable), we may not be able to do so for technical, legal, regulatory or contractual constraints. Your information will be retained in order to comply with legal and regulatory obligations as well as for analysis.

11.3.5 We will destroy your personal information as soon as possible and in a non-restorable, non re-identifiable manner.

12. What are your rights?

• Access all personal data you provide to us, in printed or in electronic form free of  charge; All your personal data is accessible in your profile. Still if you want us to send you a copy in an electronic form, please send your request on this Email address [email protected]. We will send you a confirmation within 5 days and we will deliver you a copy of your data in an electronic form within 30 days;
• Obtain rectification of any inaccurate or outdated data, or to complete any incomplete data;
• Receive or ask us to provide you or transmit your data in common format;
• Delete your personal data, provided we have no legal obligation to do otherwise;
• Ask for the restriction of any data processing activities;
• Object to certain types of processing including direct marketing, customer profiling, if applicable;
• Submit a complaint to your local Data Protection Authority;
• All rights can be exercised by submitting a written request via Email free of charge [email protected];
• Our designated officer will respond to your request within thirty (30) calendar days;
• We can only identify you via your Email address and we can only adhere to your  request and provide information if we have Personal Data about you through you having made contact with us directly and/or you using our site and/or service. We cannot provide, rectify or delete any data that we store on behalf of our users or customers.

13. Complaints about our behavior

13.1 You have the right to complain if you don’t feel DDF is living up to our responsibilities  when it comes to your data.

13.2 We have an appointed Officer, who takes your complaint very seriously. You can  contact our appointed Officer on this Email address [email protected]  We will send you a confirmation within 5 days and do our very best to deal with the issue within 30 days. If the issue is difficult or requires a lot of work it may take longer, but we will keep you updated.

13.3 You always have the right to complain to the authorities as well, but because we take  privacy matters very seriously, we would really appreciate it, if you would talk to us.  

13.4 You can complain about:

13.4.1 How your personal data has been processed;

13.4.2 How your request for access to data has been handled;

13.4.3 How your complaint has been handled;

13.4.4 Appeal against any decision made following a complaint.

 

14. Overseas Transfers of Your Personal Data

Your personal data will be stored on a Cloud Center. Your personal data will not be transferred to countries outside the EU.