Myeloma-europe.org is a website from:
European Myeloma Network (EMN). This policy is an overview of how EMN process information about all individuals with whom we interact – including trial participants, employees and healthcare professionals.
Our website address is: https://myeloma-europe.org.
EMN processes the information of clinical trial participants in trials linked to EMN. In addition, EMN may have access to patient information through collaboration agreements with third parties (e.g. genetic data). Your name, identification number or any other information which allows your direct identification will be replaced by a code. The coded study data will only be used for the purposes of the study and the follow-up of the safety and the effectiveness of the study medication. Only authorized members of the study doctor’s staff, EMN’s personnel or the third parties which help EMN with the conduct of the study will have access to the data. EMN may transfer the coded study data outside your country (e.g. to the Netherlands) in order to process or to submit them to competent authorities.
EMN will not have access to the names or contact details of trial participants, and EMN does not attempt to directly identify individuals. You should contact your Healthcare Provider, or the clinical trial site for trial participants, to learn more about how your information is processed. EMN will process key-coded information about trial participants – which may be one or more of, year of birth, initials or randomly selected unique identifier. Associated to this key coded data might be information relating to physical and psychological health, dietary information, ethnicity, sexual orientation, health and safety related information and other medical information. Information is collected from clinical trials and may include special categories of personal data.
EMN may also share information collected during the study with scientists outside EMN for further scientific research in the interest of public health. EMN will, however, not provide information about your identity to these scientists.
EMN collects information about you that is necessary for managing our relationship with you. We may record the following
Your personal data will not be used for purposes other than providing information about EMN trials. EMN, as (Co-) Sponsor of Investigator Initiated Trials (IITs), must comply with legal obligations such as WMO and the GCP guidelines. Because of this law, we are obliged in some cases (depending on your function within the EMN trial(s)) to keep your data for at least 15 years after the end of the EMN trial (s) you were involved in.
If you send us a Curriculum Vitae (CV) for trial purposes we will keep it in accordance with applicable laws and regulations (a CV or other statement of qualifications is necessary to show the education, training, and experience that qualifies an investigator/independent physician as an expert in the clinical investigation of the drug for the use under investigation). EMN will only use the personal data necessary to be able to meet the demand / legal requirements.
If you are a registered user and log in to this site, we will store a temporary cookie to determine whether your browser accepts cookies. A cookie is a small file that is sent to your browser when loading pages of a website, and is stored on the device’s hard drive. This cookie does not contain personal data and is discarded as soon as you close the browser.
As soon as you log in, we will save some cookies in connection with your login information and screen display options. Login cookies are stored for 2 days and cookies for screen display options for 1 year. If you select ‘Remember me’ when logging in, your login will be stored for 2 weeks. Login cookies will be deleted as soon as you log out of your account.
If you want to prevent cookies from being stored on your device, you can accomplish this by changing the cookie settings in your browser.
We store your IP address in order to protect our website against automated attacks.
EMN aims to retain your information for no longer than is necessary for the specific purpose or purposes for which it was collected. Information may be retained for a longer duration where applicable laws or regulations require, or allow EMN to do so.
The personal data of people who have applied for individual membership of EMN but have not been approved, will be saved for a maximum of 2 years .
For registered users of the website we also store personal information in their user profile. All users can view, change or delete their personal information at any time. Website administrators can also view and change this information.
For the security of the site, we store the IP addresses for a maximum of 2 years.
You have the right to view, revise, correct or delete your personal data. Your rights to such information may be subject to limited legal and regulatory restrictions. In addition, you have the right to withdraw your consent regarding the processing of data or to object to the processing of your personal data by EMN, and you have the right to data portability. This means that you can request us to send you, or an organization specified by you, a computer file of the personal data concerning you we have stored.
You can send a request for viewing, modifying, deleting or transferring your personal data to firstname.lastname@example.org. You can also write to this address for withdrawing your consent or for objecting to the processing of your personal data.
To ensure that the request for access to the personal data has been made by you, we ask you to send a copy of your ID with the request. To protect your privacy, in this copy, black out your passport photo, the machine readable zone) the strip with numbers at the bottom of the passport), passport number and citizen service (or social security) number. We will respond as quickly as possible, but within 4 weeks, to your request.
We would also like to point out that you have the opportunity to file a complaint with the applicable national supervisory authority, (e.g. the Dutch Data Protection Authority, see https://autoriteitpersoonsgegevens.nl/en).
For viewing, modifying and deleting personal data and for all other privacy-related matters, please contact EMN at email@example.com.
The connection with this site is always made via a secured SSL connection. Site management and backups always take place via a secure connection.
We take the protection of your data seriously and take appropriate measures to prevent misuse, loss, unauthorized access, unwanted disclosure and unauthorized modification. If you have the impression that your data are not properly secured or if there are indications of abuse, please contact us via firstname.lastname@example.org.
We register all data leaks in our quality system. Large data breaches are reported to the Dutch Data Protection Authority.
We do not receive personal data from third parties.
We do not make decisions based solely on automated processing when it concerns matters that can have (significant) consequences for people. These are decisions made by computer programs or systems without human involvement.