Last updated: 19 August, 2026
- Who we are
The website myeloma-europe.org is operated by:
European Myeloma Network (EMN)
This Privacy & Cookies Policy provides information on how EMN processes personal data relating to individuals with whom we interact, including clinical trial participants, healthcare professionals, researchers, employees, collaborators and website users.
Our website address is:
EMN is committed to protecting personal data and ensuring compliance with applicable data protection legislation, including the Regulation (EU) 2016/679 (General Data Protection Regulation – GDPR) and applicable national regulations.
- Data Protection Officer and Privacy Office
EMN has appointed a Data Protection Officer (DPO) in accordance with the requirements of the GDPR.
The DPO is responsible for monitoring compliance with data protection legislation and providing guidance on privacy-related matters.
For matters specifically related to the role and activities of the Data Protection Officer, you can contact:
Data Protection Officer (DPO)
Email: dpo@emn.org
EMN has also established a dedicated Privacy Office responsible for managing privacy-related requests, including requests concerning access, correction, deletion or other rights relating to personal data.
For all privacy-related requests and communications, please contact:
EMN Privacy Office
Email: privacy@emn.org
The Privacy Office has a dedicated account and acts as the main operational point of contact for privacy matters.
- Which personal data we collect and why
Information for clinical trial participants
EMN processes information relating to participants involved in clinical trials conducted, coordinated or supported by EMN.
Where required, personal data relating to trial participants are subject to coding or pseudonymisation procedures. This means that information such as name, identification number or any other information allowing direct identification of an individual is replaced with a unique code.
Coded study data are used exclusively for the purposes defined in the clinical trial protocol, including:
- assessment of the safety and effectiveness of investigational medicinal products;
- scientific analysis of study results;
- monitoring of participant safety;
- compliance with regulatory and legal obligations;
- submission of information to competent authorities where required.
Access to coded study data is restricted to authorised individuals, including:
- authorised EMN personnel involved in the study;
- authorised members of the investigator’s and clinical trial site teams;
- third parties supporting EMN in the conduct of clinical trials, subject to confidentiality and data protection obligations.
EMN may transfer coded study data outside the participant’s country of residence where necessary for study management, scientific analysis or regulatory submissions.
EMN does not normally have access to the names or direct contact details of clinical trial participants and does not attempt to identify individuals directly.
For further information on how personal data are processed within a specific clinical trial, participants should contact their healthcare provider, investigator or clinical trial site.
The coded information processed by EMN may include, for example:
- year of birth;
- initials;
- randomly assigned unique identifiers;
- information relating to physical and psychological health;
- medical and clinical information;
- safety-related information;
- other categories of personal data, including special categories of personal data as defined under Article 9 of the GDPR.
EMN may share coded information collected during clinical trials with external researchers or scientific organisations for further research activities in the public interest and for the advancement of medical knowledge.
In such cases, EMN will not provide information that allows researchers to identify individual participants.
- Information for Healthcare Professionals and researchers
EMN collects and processes personal data relating to healthcare professionals, investigators, researchers and other individuals involved in clinical research activities.
The information collected may include:
- name;
- organisation or institution where the individual works;
- department;
- professional role and function;
- business and visiting address;
- telephone number(s);
- fax number, where applicable;
- email address;
- professional website, where applicable;
- information required for access to restricted areas of the website.
Personal data will only be used for purposes related to EMN activities, including communication regarding clinical trials, management of professional relationships and compliance with legal and regulatory obligations.
As a (Co-)Sponsor of Investigator Initiated Trials (IITs), EMN must comply with applicable legal requirements, including clinical trial regulations and Good Clinical Practice (GCP) guidelines.
Depending on the role of the individual within an EMN clinical trial, personal data may need to be retained for a period of at least 15 years after completion of the relevant clinical trial, or for such longer period as required by applicable legislation.
If EMN receives a Curriculum Vitae (CV) for clinical trial purposes, it will be retained and processed in accordance with applicable laws and regulations.
A CV or other qualification documentation may be required to demonstrate the education, training and experience that qualify an investigator or independent physician to participate in clinical research activities.
EMN will only process personal data necessary to fulfil these purposes and applicable legal requirements.
- Cookies
When a registered user logs in to this website, EMN may store temporary cookies to determine whether the user’s browser accepts cookies.
A cookie is a small text file sent to a browser when accessing a website and stored on the user’s device.
This cookie does not contain personal data and is deleted when the browser is closed.
When a user logs in, EMN may store cookies related to authentication information and screen display preferences.
Login cookies are stored for 2 days, while cookies relating to display preferences are stored for 1 year.
If the user selects “Remember me” when logging in, login information will be stored for 2 weeks.
Login cookies are deleted when the user logs out.
Users can prevent cookies from being stored by changing the cookie settings in their browser.
- IP address
EMN stores IP addresses for security purposes, including protection of the website against automated attacks.
IP addresses may be retained for a maximum period of 2 years.
- How long we store personal data
EMN retains personal data for no longer than necessary for the purposes for which they were collected.
Personal data may be retained for longer periods where required or permitted by applicable laws, regulations or regulatory requirements.
Personal data relating to individuals who have applied for individual EMN membership but whose application has not been approved will be retained for a maximum period of 2 years.
For registered website users, personal information may be stored within their user profile. Users may view, modify or delete their personal information through the available account functionalities.
Website administrators may also access and modify this information where necessary.
For website security purposes, IP addresses may be retained for a maximum period of 2 years.
- Your rights regarding personal data
You have the right, subject to applicable legal limitations, to:
- access your personal data;
- request correction of inaccurate or incomplete data;
- request deletion of your personal data;
- request restriction of processing;
- object to processing;
- withdraw consent where processing is based on consent;
- request data portability.
Requests relating to personal data can be submitted to:
EMN Privacy Office
Email: privacy@emn.org
To ensure that a request has been submitted by the correct individual, EMN may request proof of identity.
For security and privacy reasons, when providing identification documents, unnecessary information may be removed or obscured.
EMN will respond to requests within the time limits established by applicable data protection legislation.
You also have the right to lodge a complaint with the competent supervisory authority.
- How we protect personal data
EMN takes the protection of personal data seriously and implements appropriate technical and organisational measures to prevent:
- loss of data;
- unauthorised access;
- misuse;
- unauthorised disclosure;
- unauthorised alteration.
Connections to this website are protected through SSL encryption.
Website management and backup activities are performed through secure connections.
If you believe that your personal data have not been adequately protected or if you suspect misuse, please contact:
EMN Privacy Office
Email: privacy@emn.org
- Data breach procedures
EMN records personal data breaches within its quality management system.
Where required by applicable legislation, significant data breaches are reported to the competent supervisory authorities.
- Information received from third parties
EMN may receive personal data from third parties involved in clinical research activities, including clinical trial sites, healthcare professionals, research institutions and scientific partners.
Where applicable, such processing is carried out in accordance with contractual, regulatory and data protection requirements.
- Automated decision-making
EMN does not use solely automated decision-making processes that produce legal effects or similarly significant effects concerning individuals.
- Contact information
European Myeloma Network (EMN)
Data Protection Officer (DPO)
Email: dpo@emn.org
EMN Privacy Office
Email: privacy@emn.org
