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 64601188 and principal address at Warmoesdreef 10, 4614 HC, Bergen op Zoom, the Netherlands.
DDF is the data controller and processor (hereinafter, the “Data Controller” and the “Data Processor”) responsible for identifying the purpose and the means of the processing of your personal (health) data in relation with Duchenne Map. DDF will process your personal (health) 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.
This Privacy Policy is effective as of 1 June 2022 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 by 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.
This policy will give you information regarding the Services on:
4.1 Directly from you upon registration/validation or while using the Duchenne Map.
4.2 The Organization you are affiliated with: Patient Organization, Research Organization, Care Center, or Company.
5.1.1 Full name and contact info: To know who you are and connect you with other Patients, Patient Organizations, Researchers and Healthcare Experts. You may opt out at any time.
5.1.2 Email address: To verify your account, to send you important emails about relevant topics, and for related newsletter subscription. You may always opt out.
5.1.3 Date of birth (if applicable):
5.1.4 Address: To identify Registered Users on the map.
5.1.5 Health Data and related Sensitive Information: To deliver the Services and especially to make the best matches and communication channels among Patients, Patient Organizations, Researchers, and Healthcare Experts.
5.2.1 Login history and usage data. For security and performance optimization.
5.2.2 Communication history. For security, performance optimization, archiving and statistical purposes.
5.2.3 Your messages in our contact center. To keep track of potential issues, provide assistance, respond to your message, and keep a log of communication for security reasons.
6.1 To know you better and provide optimized and customized services for maximum convenience and security.
6.2 Archiving purposes that may facilitate you in future queries.
6.3 For communication purposes as allowed by law and your expressed preferences. You may always opt out.
6.4 To verify and validate your information and all information in the Duchenne Map for maximum data accuracy and safety.
Under the 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 of preventive medicine and medical diagnosis (GDPR Art. 9(2)(h)) and/or for scientific research and statistical purposes (GDPR Art. 9(2)(j)).
10.1 Registration data: Only during the period of your registration.
10.2 Usage data: Only during the period of your registration.
10.3 The criteria used to determine our retention periods include:
12.1 You have the right to complain if you don’t feel we are living up to our responsibilities when it comes to your data.
12.2 We have an appointed Data Protection Officer (DPO), who takes your complaint very seriously.
Contact our DPO: privacy@duchennemap.org
We will send you a confirmation within 5 days and do our best to resolve 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.
12.3 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.
12.4 You can complain about:
Your personal data will be stored on a Cloud Center. Your personal data will not be transferred to countries outside the EU.
Article 4(2) and (6) of the GDPR.
The data we collect depends on the types of Registered Users.
Email address, Address.
I am an adult patient, carrier or a caregiver (checkbox), Phone, Birthday, Gender, Address.
Patient First Name, Patient Last Name, Gender, Birthday.
Disease type (checkbox):
Ambulation status (checkbox):
Use of ventilation (checkbox).
Mutation type / exon (checkbox / enter a value between 1 and 79):
Corticosteroids (checkbox):
Patient Organization Name, Email address, Address.
Patient Organization Name, Website, Social media profiles, Address, Phone.
Contact Person: First name, Last name, Email address, Title, Phone.
Team Member: First name, Last name, Patient Organization Role (from drop-down, e.g. chair, board member), Email address, Phone.
Number of patients (Duchenne or Becker).
Services provided by the Patient Organization (from drop-down, e.g. social work, psychology).
Clinical Trial ID.
Research Organization Name, Email address, Address.
Research Organization Name, Address, Phone, Website.
Contact Person: First name, Last name, Email address, Title, Phone.
Affiliated Researcher (select from validated Researchers or open field).
Affiliated Healthcare Expert (select from validated Healthcare Experts or open field).
My Clinical Trials, My Projects, My Publications, and Investigational Medicinal Product (IMP) — same fields as above.
Email address, Address.
Affiliations: Research Organization, Care Center, Patient Organization (each: select from validated list or open field).
My Clinical Trials, My Projects, My Publications, and Investigational Medicinal Product (IMP) — same fields as above.
Care Center Name, Email address, Address.
Care Center Name, Address, Phone, Website.
Contact Person: First name, Last name, Email address, Title, Phone.
Duchenne Care Center Certification (CCDC Certification) (checkbox).
Member of EURO-NMD ERN (checkbox).
Services provided by the Care Center (from drop-down, e.g. Audiology, Cardiology).
Affiliated Healthcare Expert (select from validated list or open field).
Affiliated Researcher (select from validated list or open field).
Number of patients (Duchenne or Becker).
Affiliations: Patient Organization, Research Organization, Care Center (each: select from validated list or open field).
Email address, Address.
Title, Address, Phone, Website.
Healthcare Experts Specialties (from drop-down, e.g. Cardiologist, Developmental pediatrics).
Affiliations: Care Center, Research Organization, Patient Organization (each: select from validated list or open field).
My Clinical Trials, My Projects, My Publications, and Investigational Medicinal Product (IMP) — same fields as above.
Company name, Email address, Address.
Company name, Address, Phone, Website, social media.
Contact Person: First name, Last name, Email address, Title, Phone, Department (from drop-down, e.g. Access, Advocacy).
My Clinical Trials, My Projects, My Publications, and Investigational Medicinal Products (IMP) — same fields as above.