Privacy and cookies

EMN Trial Office S.r.l. Impresa sociale (hereinafter referred to as "EMN TO") is a non-profit organisation based in Turin, Italy, whose activities include promoting and supporting scientific research in the field of haematological diseases, with a particular focus on multiple myeloma.
EMN TO supports scientific research activities and may be involved in the design, coordination, management and conduct of clinical research projects and clinical trials, as well as in activities aimed at supporting patients and their families.
EMN TO recognises the importance of protecting personal data and is committed to ensuring that personal data are processed in accordance with Regulation (EU) 2016/679 ("GDPR"), applicable Italian data protection legislation and, where applicable, the specific regulatory requirements governing clinical research and clinical trials, including Regulation (EU) No 536/2014 on clinical trials on medicinal products for human use and the applicable Good Clinical Practice (GCP) requirements.
This Privacy Notice explains how EMN TO processes personal data in connection with the EMN TO website and with its institutional, scientific, research and organisational activities.
Where specific information is required for a particular processing activity, additional privacy information may be provided separately.

EMN Trial Office S.r.l. Impresa sociale

Registered office:
Via Saluzzo 1/A
10125 Torino, Italy

Operating office:
Via Madama Cristina 97 - Via Pietro Giuria 40
10126 Torino, Italy

Email: amministrazione@emnresearch.it

Depending on the specific processing activity, EMN TO may act as a data controller, joint controller or, where applicable, as a data processor on behalf of another organisation.
The applicable role and responsibilities of EMN TO will depend on the specific processing activity and on the arrangements governing the relevant activity.

EMN TO has appointed a Data Protection Officer ("DPO") to monitor compliance with applicable data protection legislation and to provide advice and support on data protection matters.

Data Protection Officer (DPO)
E-mail: dpo@emnresearch.it

For general privacy enquiries, requests relating to the processing of personal data, or the exercise of data subject rights, individuals may contact:
Privacy Officer
E-mail: privacy@emn.org

For matters relating to clinical trials, please contact:
EMN TO Clinical Trials Office
Email: amministrazione@emnresearch.it

When users access or interact with the EMN TO website, certain personal data may be collected and processed.
These data may include:
- IP address;
- browser and device information;
- date and time of access;
- information relating to the pages and resources requested;
- technical information relating to the operating system and device used;
- information provided voluntarily by users when contacting EMN TO by email or through website forms;
- other information necessary to respond to requests or provide services available through the website.

The processing of such data may be necessary to:
- enable navigation and operation of the website;
- respond to requests submitted by users;
- provide information requested by users;
- maintain and monitor the security and proper functioning of the website;
- prevent and investigate unlawful activities or misuse of the website;
- comply with applicable legal obligations.

The website may also process technical information for statistical purposes, including information concerning website usage and the geographical origin of website traffic, where permitted by applicable law.

As part of its clinical research activities, EMN TO may process personal data relating to participants in clinical trials and other research projects conducted, coordinated or supported by EMN TO.
Depending on the role of EMN TO in the relevant study, EMN TO may act as Sponsor, Co-Sponsor, data controller, joint controller or data processor.
Clinical trial participant data are generally coded or pseudonymised. Direct identifiers, such as name and surname, are generally replaced with a unique study-specific code.
Coded or pseudonymised data may be processed for purposes including:
- the conduct and management of clinical trials;
- assessment of the safety and efficacy of investigational treatments;
- analysis of clinical trial results;
- monitoring of participant safety;
- pharmacovigilance and safety reporting;
- compliance with legal and regulatory requirements;
- communication with competent regulatory authorities and ethics committees, where required;
- scientific analysis and research activities permitted by the applicable study documentation and legislation.
Depending on the specific study, the categories of personal data processed may include:
- year of birth;
- study-specific identifiers or initials;
- health and medical information;
- clinical information;
- information relating to safety and adverse events;
- laboratory and diagnostic information;
- genetic data or other special categories of personal data, where applicable.
Health data and genetic data constitute special categories of personal data under Article 9 of the GDPR and are processed only where the applicable legal requirements and conditions for such processing are satisfied.
Access to clinical trial data is restricted to authorised individuals and organisations involved in the relevant research activities, which may include:
- authorised EMN TO personnel;
- investigators and personnel of participating clinical trial sites;
- healthcare professionals and researchers;
- clinical research organisations;
- laboratories and other service providers;
- sponsors and co-sponsors, where applicable;
- competent regulatory authorities and ethics committees, where required.
Recipients are subject to appropriate confidentiality, data protection and security obligations.
EMN TO does not use coded or pseudonymised clinical trial data to attempt to directly identify participants.
For specific information concerning the processing of personal data in connection with a particular clinical trial, participants should refer to the privacy information provided as part of the relevant clinical trial and/or contact the relevant investigator or clinical trial site.

EMN TO may process personal data relating to healthcare professionals, investigators, researchers, scientific collaborators and other individuals involved in clinical research and scientific activities.
The categories of personal data may include:
- name and surname;
- professional title and role;
- healthcare institution or organisation;
- department or organisational unit;
- professional address;
- telephone number;
- professional email address;
- professional qualifications;
- training and experience;
- Curriculum Vitae and other professional documentation;
- information necessary to document qualifications and suitability for participation in research activities.
Such data may be processed for purposes including:
- managing professional and scientific relationships;
- planning, coordinating and conducting research activities;
- managing clinical trials;
- documenting investigators' qualifications, training and experience;
- complying with contractual, legal and regulatory obligations;
- maintaining documentation required by applicable legislation and Good Clinical Practice;
- communicating with healthcare institutions, sponsors, research organisations and competent authorities, where necessary.
Where EMN TO acts as Sponsor or Co-Sponsor of Investigator-Initiated Trials (IITs), EMN TO processes personal data in connection with the responsibilities and obligations applicable to the relevant clinical trial, including those arising under Regulation (EU) No 536/2014 and applicable Good Clinical Practice (GCP) requirements.

In connection with its institutional and non-profit activities, EMN TO may process personal data relating to patients, family members, supporters, donors, volunteers, event participants and other individuals who interact with EMN TO.
The categories of data processed depend on the specific activity and may include:
- identification and contact details;
- professional or organisational information;
- information provided in correspondence with EMN TO;
- information relating to participation in events or initiatives;
- donation-related information, where applicable.
Such data are processed only for purposes connected with the relevant activity, including responding to requests, managing relationships, organising events and initiatives, fulfilling legal obligations and carrying out EMN TO's institutional and non-profit activities.
Where required, EMN TO will provide additional privacy information concerning the specific processing activity.

Depending on the specific processing activity, EMN TO processes personal data on the basis of one or more legal grounds provided for under the GDPR and applicable legislation.
These may include:
- compliance with a legal or regulatory obligation;
- performance of a contract or taking steps at the request of the individual prior to entering into a contract;
- performance of a task carried out in the public interest, where applicable;
- legitimate interests pursued by EMN TO or a third party, where such interests are not overridden by the rights and freedoms of the individual;
- consent, where consent is the appropriate legal basis.
Where special categories of personal data are processed, an applicable condition under Article 9 of the GDPR will also apply.
The applicable legal basis depends on the nature and purpose of each specific processing activity.

In connection with clinical research and other activities, personal data may be transferred to recipients located outside the European Economic Area ("EEA"), where this is necessary for the relevant activity or to comply with applicable legal or regulatory requirements.
Where personal data are transferred outside the EEA, EMN TO will ensure that the transfer is carried out in accordance with applicable GDPR requirements and that appropriate safeguards are implemented where required, including, where applicable:
- an adequacy decision;
- Standard Contractual Clauses;
- another lawful transfer mechanism recognised under applicable data protection legislation.

EMN TO retains personal data for no longer than is necessary to fulfil the purposes for which the data were collected, unless a longer retention period is required or permitted by applicable law.
In the context of clinical trials and clinical research, certain personal data and essential study documentation may be retained for longer periods in accordance with applicable legislation, regulatory requirements, contractual obligations and Good Clinical Practice.
The applicable retention period may therefore vary depending on the nature of the processing activity, the specific clinical trial and EMN TO's role in the relevant activity.

Subject to the conditions and limitations provided for by applicable law, individuals may exercise the rights granted under Articles 15 et seq. of the GDPR, including:
- the right to obtain access to personal data;
- the right to request rectification of inaccurate or incomplete personal data;
- the right to request erasure of personal data;
- the right to request restriction of processing;
- the right to object to certain processing activities;
- the right to withdraw consent where processing is based on consent;
- the right to data portability, where applicable;
- the right not to be subject to a decision based solely on automated processing, including profiling, where the conditions of Article 22 GDPR apply.
The exercise of these rights may be subject to limitations provided for under applicable legislation, particularly in the context of clinical research and where exercising a particular right could affect the integrity or validity of the research.

Requests may be submitted to:

Privacy Officer
Email: privacy@emn.org

or to:
Data Protection Officer (DPO)
E-mail: dpo@emnresearch.it

To protect personal data against unauthorised disclosure, EMN TO may request information necessary to verify the identity of the individual making the request.
Individuals also have the right to lodge a complaint with the competent data protection supervisory authority if they believe that their personal data have been processed in breach of applicable data protection legislation.

EMN TO implements appropriate technical and organisational measures designed to protect personal data against unauthorised or unlawful processing and against accidental loss, destruction, alteration or disclosure.
These measures are designed to ensure an appropriate level of security taking into account the nature, scope, context and purposes of the processing and the risks to individuals.
The EMN TO website uses appropriate technical security measures. Website hosting, technical administration, maintenance and backup activities are carried out using appropriately protected systems.

Personal data may be collected:
- directly from the individuals concerned;
- through the EMN TO website;
- from clinical trial sites;
- from healthcare professionals and investigators;
- from research organisations and scientific institutions;
- from sponsors, co-sponsors and other organisations involved in clinical research;
- from service providers and other partners supporting EMN TO's activities;
- from publicly available sources, where permitted by applicable law.
Where personal data are not collected directly from the individual, EMN TO will provide the information required under Article 14 GDPR, unless a lawful exemption applies.

EMN TO does not make decisions based solely on automated processing, including profiling, that produce legal effects or similarly significantly affect individuals.

EMN Trial Office S.r.l. Impresa sociale

Registered office:
Via Saluzzo 1/A
10125 Torino, Italy

Operating office:
Via Madama Cristina 97 - Via Pietro Giuria 40
10126 Torino, Italy

General Information
Email: amministrazione@emnresearch.it

Clinical Trials Office
Email: amministrazione@emnresearch.it

Data Protection Officer (DPO)
Email: dpo@emnresearch.it

Privacy Officer
Email: ilaria.petito@emn.org

The EMN TO website may use cookies and similar technologies.
Technical information may be collected automatically when visitors access the website, including information relating to the device, browser, IP address, date and time of access and use of the website.
The EMN TO website may use:
- technical cookies, which are necessary for the operation and security of the website;
- analytics cookies, where applicable and in accordance with applicable legislation;
- other cookies or similar technologies, where applicable.
The use of non-essential cookies is subject to the requirements applicable under Italian and European data protection and electronic communications legislation.
Further information concerning the cookies used by the EMN TO website, their purposes, duration and how users can manage their preferences is provided in the Cookie Policy.

Under a technical perspective and independently from the purposes of use, cookies can also be classified in:

Proprietary cookies: generated directly by the publisher’s website.

Third-party cookies: generated by other websites through contents or services hosted by or used by the publisher’s website.

Session cookies: temporary cookies that disappear from the computer when the user leaves the visited website or closes the browser.

Permanent cookies: they are stored permanently on the user’s computer (and are not deleted when the browser is closed) until they expire or are deleted by the user. Their expiration date is determined by the website that initiates them. They are often used to track user habits, so that when the user revisits the website, the latter recognizes stored information and adapts to the user’s preferences.

Web Beacons. Webpages and HTML e-mails may embed small “objects” or code fragments defined as web beacons. In their simpler configuration, Web beacons allow a website to transfer or collect information through a query activated by a graphic image. Websites can use Web Beacons for various purposes, such as analyses of the use of websites, management activities, reports about advertisement, customizations of promotional material and contents.

Regulations about the use of cookies concern all the similar technologies, such as Web Beacons, Web Bugs, Clear GIFs, or other technologies that need to be encompassed in these very provisions since allowing the identification of users or their devices.

The website www.emntrialoffice.org uses proprietary and third-party Technical cookies and Analytics cookies.

Technical cookies are used by this website in order to transmit session IDs for the authentication and the safe exploration of the Website.

The use of these cookies allows users to avoid the use of other IT techniques that are potentially dangerous for the users’ browsing privacy, and allows browsing according to a set of selected criteria.

By means of the website www.emntrialoffice.org, EMN Trail Office s.r.l. i.s. does NOT use profiling cookies and cookies monitoring users’ surfing behavior in order to publish advertisement based on interests revealed by users during their browsings of the website.

On our Website, we use two different types of cookie –– session cookies and persistent cookies. Session cookies are temporary cookies that are stored in your computer’s memory until the browser is closed. Persistent cookies remain in your computer’s memory for a longer period of time or until you delete it manually (the period of time a cookie remains in your computer depends on its “vital duration” and on your browser preferences).

If necessary, further information is available clicking on the following URLs (on the right side of the table below):

Type of cookie: Necessary Cookies
What is their purpose? Necessary cookies are essential for the proper functioning of our Website, allowing visitors to browse it and to take advantage of its features. For instance, the memorization of previous actions (inserted texts) whenever the user comes back to a previous page during the same session.
Do they collect my data/do they identify me? No. Necessary cookies do not identify you as an individual. If you do not accept these cookies, this could affect the proper functioning of this Website or of some of its sections.

Type of  cookie: Performance Cookies
What is their purpose? They help us in understanding how users interact with our website, providing information about the visited sections, the time passed exploring the website, and any sort of issue that might have occurred, for instance an error message. This helps us in improving the performance of our Website.
Do they collect my data/do they identify me? No. Performance cookies do not identify you as an individual. All data are collected anonymously.

When you visit our Website, you might receive cookies coming from third-party sites or domains. We put effort into identifying these third-party cookies before they are used, so that you are able to decide whether to accept it or not. Further information about this type of cookie may conceivably be available on the related third-party website.

Most Internet browsers are initially set up to accept cookies automatically. You can change these settings to block cookies or to be informed whenever a cookie will be sent to your device. There are many ways to manage cookies. We ask you to consider the instruction manual or the browser guide to understand how to control or modify your browser settings. If you disable the cookies that we use, this could affect your experience during the exploration of our Website. If you use different devices to visualize and enter our website (i.e. computers, smartphones, tablets), you should be sure that every browser on every device is set up according to your preferences about cookies.

Session/temporary coookies: these cookies are deleted from your device as you log off from our Website.
Permanent/persistent cookies: these cookies are not deleted from your device as soon as you log off from our Internet website; they remain on your device for a longer period of time.

For further information you can consult the following page: http://www.aboutcookies.org/.

To manage or delete cookies, see http://www.aboutcookies.org/how-to-delete-cookies/.

To unsubscribe yourself from behavioral advertising lists: http://www.youronlinechoices.com/uk/your-ad-choices.

In addition to what has been specified above about the web browsing data and in the Cookie Policy about cookies, the User shall be free to supply his/her personal data completing queries and/or forms in order to request services and/or information from the website.

If the User does not supply his/her personal data, it might be impossible to fulfill the request.

Personal data of every user of this Website and of any of the aforementioned types, except as otherwise specified in the proper acquisition notices, could be used for:
- allowing the exploration of our Website’s public pages;
- replying to requests sent to the e-mail addresses published on the Website;
- collecting anonymous statistical information sent to the e-mail addresses published on the Website;
- extracting anonymous statistical information about the Website use (i.e. analyses about the most visited pages)
- extracting anonymous statistical information on geographical origins of page requests;
- checking the proper functioning of the Website;
- verifying responsibilities in case of hypothetical computer crimes against the website.

Personal data of users who register to the Website shall be treated not only for the purposes mentioned above but also for other purposes related to the services provided, and especially for:
- processing user registrations for the services provided;
- allowing the exploration through the reserved pages of our website;
- calculating commercial statistics, performing market and behavioral studies in aggregated form;
- performing customer care related operations;
- performing projection related operations;
- complying with legal requirements and contractual provisions.

Only under your explicit consent, your personal data will be eventually managed by EMN Trial Office s.r.l. i.s. for:
- surveys, polls and market studies; also through personal or phone interviews, questionnaires, etc.;
- editorial or informational activities (newsletters), promotion and sale of other products and/or services realized by EMN Trial Office s.r.l. i.s. or by third parties operating in fields directly related to the typologies of performances and services already provided, also through automated systems (such as e-mails, SMSs, and so on).

In accordance with the aforementioned purposes and upon written notice to third parties in compliance with all applicable EU laws, rules, and regulations, we will be allowed to disclose data in Italy or abroad to any third parties that conduct data analyses with statistical purposes and to any third parties charged by the Owner with the maintenance of this website.

Registered users’ personal data can be disclosed to other subjects charged by the Owner with the conduct of services available in this Website.

No personal information acquired by the WEB service shall be disclosed.

Every communication and disclosure shall be conducted in conformance with the aforementioned purposes of the Processing.

The processing operations connected to the web services offered by this website take place at the operational headquarters in via Donizetti 24 - 10126 Torino (Italy) and are only handled by qualified staff in charge of the Processing.
If needed, data related to the services provided may be handled by the staff of other companies that are responsible for the maintenance of the technological aspects of the Website. This staff shall process data in its own operational headquarters, in the role of Owner, and in compliance with all the applicable laws.

In relation to the purposes of the present notice, personal data are processed with automated tools, by specifically appointed staff, for the time strictly necessary to achieve the purposes for which they were collected, and in full conformance with every precautionary measure that may safeguard their safety, their privacy, and the full compliance with all the applicable laws.

Specific safety measures are observed in order to prevent the loss of data, illegal or improper uses, and unauthorized accesses. For further information, we wish to inform you that the provision of personal data is mandatory insofar as they are used for the fulfillment of contractual and/or legal obligations by our own social company.

Technical cookies allow web browsing and help in providing services requested by users. They are not used for further purposes and are usually installed directly by the Website’s publisher or by the manager. Without these cookies, some operations could not be accomplished or would be more complicated and/or less safe, such as home banking (consultation of statements of accounts, bank transfers, invoice payments, etc.), for which cookies are essential in keeping on user session identifications.

Analytics cookies are useful to collect information on the use of the Website in order to develop technical- or marketing-oriented statistical analyses.