Information on data protection 

Your participation in the online survey for Lymphoma Coalition with admedicum Business for Patients GmbH [&] Co KG (admedicum).

For maximum security of your data, the online survey is anonymous (except for your email address if you choose to provide it) and voluntary. admedicum is acting as the data controller according to Art. 4.7 of the European General Data Protection Regulation (GDPR) in this respect and we guarantee compliance with its strict protection standards.

As such, we ask you to read and agree to the following privacy policy before giving your personal data. The legal basis for the collection of data by admedicum results from art. 6.1 a) of the GDPR.

The objectives of the Lymphoma Coalition survey are:

·         Gain insights by hearing the patient’s voice on the disease impact for patients’ everyday life and activities.

·         Understanding caregivers’ and patients’ burden and needs.

·         Detection of potential access hurdles to medical care and healthcare gaps.

·         The online survey will ask questions including the type of treatment you receive. Under no circumstances will products be described or recommended directly or indirectly in the survey.

What personal data is collected as part of the preliminary inquiries?

For the preliminary inquiry and contacting you by admedicum, so-called personal data is collected. These mainly include your name, information about your disease and treatment, and your email address. Apart from the survey platform SurveyMonkey (see below), only employees of admedicum and Lymphoma Coalition will see your personal data, as far as this is reasonable and necessary for the fulfillment of their tasks.  Unless you are selected and agree to participate in a follow-up interview your data will not be used outside of the described preliminary inquiry, except for the purpose of contacting you for future studies and complying with legal requirements (see below). Only if and after your participation in the interview has been confirmed and following the conclusion of a more comprehensive, new data protection agreement, will your data be used for preparation of the interview.

Responsible for data processing

is

Lymphoma Coalition

8 Stavebank Road N, Unit 401

Mississauga ON L5G 2TA

Canada

Charitable Business Number: 803211465

We, admedicum Business for Patients GmbH [&] Co KG, Industriestrasse 171,50999 Cologne, Germany, act on behalf of Lymphoma Coalition and conduct the survey via an online data collection platform. The name of this company is:

Momentive (formerly SurveyMonkey Europe UC), 2 Shelbourne Buildings, Second Floor, Shelbourne Rd, Ballsbridge, Dublin 4, Ireland

Survey Monkey’s privacy policy can be viewed in detail here: https://www.surveymonkey.com/mp/legal/privacy-basics/

We guarantee that all data saved by Survey Monkey will be stored on servers in the European Union only.

Lymphoma Coalition does not receive any personal data from the preliminary inquiry unless and until you have agreed and signed another data privacy agreement related to the interview.

How do we store your data and for how long?

By storing it on a cloud service certified with the highest industry standard ISO27018 on servers within the European Union and/or Switzerland only, admedicum ensures that your electronically stored data is safe from loss, destruction, manipulation, or access by unauthorized persons. Written notes and documents are also digitized and electronically secured. Paper originals are also stored in a secure location.

Your data will be stored until the interview is assembled, but no longer than a maximum of 3 months. After that, all your data will be deleted from Survey Monkey and, unless you participate in the interview and the respective data privacy consent related to it says otherwise, on any other server and data storage system used by admedicum.

You also have the right to revoke the storage and use of your personal data at any time. Please read the next section for more information.

What rights do you have regarding your data:

You can revoke your consent to the use of the data you have provided at any time and without giving reasons. You then have the right to request the correction, blocking or deletion of all your information/data stored up to that point. We will comply with your request without delay and inform you of the measures taken.

In the event of a revocation, complaints, or requests for information, but also simply in the event of questions regarding data protection, please contact our data protection officer:

Dr. Ruth Reimann

admedicum Business for Patients GmbH [&] Co KG

Industriestrasse 171

50999 Cologne

dataprotection@admedicum.com

Tel.: 02236-94733-60

In addition, if you live in a member state of the European Union, according to Article 77 of the GDPR, you also have a right of appeal to a supervisory authority, usually the respective data protection authority of the local EU jurisdiction in which you live.