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Privacy notice

Curewiki™ and your personal data

This website is operated by Curewiki SRL, a company incorporated and registered in Belgium with company number 0786.411.860 whose registered office is at Rue d’Angoussart 79, 1301 Wavre, Belgium.

In so far as we process your Personal Data*, Curewiki acts as the Data Controller**. You can contact us via email: privacy@curewiki.health for any question regarding your privacy.

* “Personal Data” is information through which a natural person is identifiable or may be identified. Curewiki collects, uses and processes your Personal Data in order to provide you with services, products or information that you request.

** Data Controller” means Curewiki, to the extent that we determine the purposes and means of the processing of your Personal Data.

The protection of your Personal Data is of importance for Curewiki and we treat your privacy with utmost care.

We have established this Privacy Notice to explain to you how Curewiki treats your Personal Data. The Privacy Notice applies to the Personal Data that you provide and that we Process * about you as a natural person when you visit our website.

* “Processing” means everything we do with your Personal Data as further explained in this Privacy Notice. It may include actions such as collection, recording, organization, structuring, storage, adaptation or alteration, retrieval, consultation, use, disclosure by transmission, dissemination or otherwise making available, alignment or combination, restriction, erasure or destruction.

Which Personal Data do we collect when you visit our website?

We Process the Personal Data that you provide to us when you interact with us via this website by signing up (i.e. completing and sending us the patient registration form) or, when signed in, finetuning your patient profile based on additional eligibility criteria questions. These Personal Data include:

a. Identification data

  • Identification data of yourself: (name, first name, postal address, date of birth, etc).
  • Identification data of your referring hospital or medical center (if applicable);
  • Telephone and e-mail data (e-mail address and telephone number);
  • Any other information that you voluntarily give us. Please be aware that, to the extent this information contains Personal Data of others (relatives, your doctor), you should only share it with us if you have that person’s informed consent.

In the event that non-personal data is combined with personal data in such a way that it is possible to identify the persons concerned, we will treat this data as personal data until it is impossible to link it to a specific person.

b. Health data

  • Data relating to your current illness (previous and current diagnoses, any interventions performed, etc.);
  • Data relating to any medication you are taking;
  • Data relating to your general physical condition (disability, pregnancy, etc.);
  • Data on your general psychological state (mental illness, behavioural problems, etc.);
  • Any other medical information necessary to establish whether you are eligible for the clinical trial;
  • Any other information you voluntarily give us.

c. Cookies and other tracking data

Like almost every website, our website also uses cookies *. Some of these are necessary to make your website visit possible, other allow us to optimize your browsing experience or the way we interact with you. Find out more about our cookies in our cookie policy.

* Cookies are small text files that webstes place on your device as you are browsing. They are processed and stored by your web browser. In and of themselves, cookies are harmless and serve crucial functions for websites.

d. Curewiki Ambassadors

If you decide to become a Curewiki Ambassador, we collect following identification data:

  • Name
  • E-mail
  • Blog or website
  • Facebook
  • Instagram
  • Any other information you voluntarily give us.

How do we collect your Personal Data?

We collect your personal data through the answers you provide when you register on our site (direct collection method) either as an interested patient or as a Curewiki Ambassador.

In order to provide you with clinical trials relevant to your medical condition, our website asks you a series of questions about your health status. The purpose of these questions is to determine whether you meet (or do not meet) the selection criteria for clinical studies of which Curewiki is aware.

It is also possible, subject to your consent, that we may  collect your health data directly from your doctor (indirect collection method).

Indirectly collected data will only be processed if it is not possible for us to determine from the information you have provided directly whether you meet the selection criteria for a particular clinical trial (or not). However, contact with your doctor is also only made on the basis of your explicit consent.

Why do we collect your Personal Data?

We Process your Personal Data only for the following purposes:

  • To ensure that the patient is uniquely identified;
  • To organise the registration of interested patients;
  • Linking the various medical parameters of a patient with the selection criteria of a particular clinical trial;
  • Determining their eligibility in clinical trials;
  • Linking patients with institutes (investigation sites) that can offer them clinical trials relevant to their disease;
  • Notifying patients by e-mail of existing trials.
  • If you decide to become a Curewiki ambassador: the registration of your details as requested to set up your account as a Curewiki ambassador and any subsequent Processing for direct marketing and social media purposes.

Why are we allowed to Process your Personal Data? (legal basis)

With regard to the purposes as stated above, we Process your personal data exclusively on the basis of your explicit informed consent, which is registered when you sign up via the website (and which may be explicitly requested/confirmed at key points of interaction).

You have the right to withdraw your consent at any time by unsubscrib from the list of interested patients or as a Curewiki ambassador.

With whom do we share your Personal Data?

a. Communication to internal recipients 

We only give access to your personal data to internal persons at Curewiki whose function requires it. Access to your data is strictly limited to them. We regularly check these accesses and secure the information provided, as far as possible.

b. Communication to third party recipients in the context of clinical trials

In line with the stated purpose of the Website, Curewiki will share the following information with functional third parties:

PartyInformationConsent
Clinical Trial SponsorsAggregated (anonymous *) information on number of patients in a certain territory that meet predefined eligibility criteria for Sponsor led clinical trialsNot required as these data do not constitute Personal Data
Clinical Trial SponsorsIndividualized pseudonymized** Personal Data on patients that meet predefined eligibility criteria for Sponsor led clinical trialsBy signing up on the Website, you give your explicit informed consent
Investigation Sites partaking in clinical trialsIndividualized Personal Data on patients that meet predefined eligibility criteria for Sponsor led clinical trials, either at the patient request or the Sponsor requestYour explicit informed consent*** will be requested prior to any data transfer

* “To be completely transparent, when patients register on Curewiki, they provide data that Curewiki uses and shares in an aggregated and de-personalised way with research partners working on future treatments and cures. This is another way, besides participating in the trials themselves, in which the Curewiki community contributes to the advancement of scientific research.”

** “‘Pseudonymisation’ means the Processing of Personal Data in such a manner that the Personal Data can no longer be attributed to a specific data subject without the use of additional information, provided that such additional information is kept separately and is subject to technical and organisational measures to ensure that the Personal Data are not attributed to an identified or identifiable natural person. Curewiki will NEVER share patient Personal Data with Clinical Trial Sponsors in a non-pseudonymised format.”

*** “Curewiki will NEVER sell or provide personally identifiable information to anyone without the patient’s express and specific consent. This can only happen, with the patient’s explicit and specific consent, in the event that we identify a match with a clinical trial for which the patient has passed the eligibility criteria. In this case, we inform the patient and, after receiving approval for that specific trial, we put the patient in contact with the investigation site or sponsor of the clinical trial.”

c. Communication to other third parties – service providers, government authorities

Curewiki will provide access to or share Personal Data on an as-needed basis with other third parties, such as trusted service providers, consultants and contractors who are granted access to Curewiki’s facilities and systems or which provide services to Curewiki, and with government agencies or authorities, competent courts and others as required by law or if it is necessary to fulfill your request.

Third party service providers include IT services and website hosting companies, (internet) connectivity providers, provider of data analytics (Google) and tracking services, providers of press release and newsletter distribution networks, as well as service providers that provide technical and administrative support for the Website and underlying IT systems.  These service providers provide their services from lo-cations within and outside of the European Economic Area (“EEA”), including the USA. Curewiki will only share your Personal Data with third parties whom Curewiki has contractually restricted from using or disclosing the Personal Data except as necessary to perform services on our behalf or to comply with legal requirements.

By virtue of the laws that apply to them and their public duties, certain EU or Member State authorities and/or institutions may require Curewiki to provide them with some of your personal data. When such a case arises, it is therefore possible that Curewiki may be obliged to pass on your personal data to these “third party authorities” without asking for your prior consent. On the other hand, Curewiki commits itself to transmit to them only the data that these authorities/institutions strictly need for the exercise of their missions, and this by application of the principle of minimisation.

What if your Personal Data is transferred outside the European Economic Area (EEA)?

Curewiki may need to transfer your data to countries outside the EEA, where the privacy protection is less developed, including the USA.

Curewiki relies on available legal mechanisms to enable the legal transfer of Personal Data across borders. To the extent that Curewiki relies on the Standard Contractual Clauses * (also called the Model Clauses), to authorize the transfer of Personal Data, Curewiki will comply with those requirements, including where there may be a conflict between those requirements and this Privacy Notice.

* The European Commission can decide that standard contractual clauses offer sufficient safeguards on data protection for the data to be transferred internationally. It has published sets of such standard clauses covering different transfer scenarios.

In the absence of the aforementioned appropriate safeguards, Curewiki may where permitted by applicable data protection laws (including the GDPR) rely on a deroga-tion applicable to the specific situation at hand (e.g. the data subjects’ explicit con-sent, the necessity for the performance of an agreement, the necessity for the de-fense of legal claims).

How do we secure your Personal Data?

We use reasonable and appropriate technological and operational security measures to keep your Personal Data protected against any unauthorized access or unlawful use. Such measures include:

  • Ensuring the physical and digital security of our equipment and devices by using appropriate password protection and encryption where necessary;
  • Ensuring the physical security of our offices and other sites;
  • Maintaining a data protection policy for, and delivering data protection training to, our employees; and
  • Limiting access to your Personal Data to those at Curewiki who need to use it in the course of their work.

Due to the fact that we process some of your health data*, we undertake to provide a framework for the Processing of your data with increased security.

* Because we process some of your health data, we may need to ask you to provide us with proof of your identity before we can give you access to the processed data. This is to ensure that no unauthorised third party can gain access to your data without your permission, due to the sensitivity of the information involved.

However, due to the nature of internet communications, we cannot guarantee or warrant that the transmission of your Personal Data to us is secure.

For how long do we keep your Personal Data ?

In accordance with the principle of limited retention, the period of retention of data will be strictly for the period necessary for the fulfilment of the purposes for which the processing is justified, not beyond. Under no circumstances will your data be kept for an unlimited period.

Unless otherwise agreed or required by Law, we keep all data for a period of 15 years, starting from the completion of your registration on our website.

When data is no longer required for the purposes for which it was processed or if you withdraw your consent and no other legal basis can be proven, the data must be destroyed so that it is impossible for anyone to trace your identity.

What rights can you exercise?

Based on the applicable Belgian and European privacy legislation, and provided that you meet the requirements set by this legislation, you can contact us to exercise the following rights:

  • Withdrawing your consent for the Processing of your Personal Data, to the extent that the Processing of your Personal Data was initially based upon your consent. To do so, simply use the unsubscribe option here.
  • Seeking access to, correcting, deleting* or restricting your Personal Data.
  • Objecting to any Processing for direct marketing.
  • Objecting to any Processing based on our legitimate interest.
  • Seeking the portability** of your Personal Data, which you have communicated to us and that we have Processed.

* You can obtain the deletion of your personal data when one of the following reasons applies:
• The data are no longer necessary for the purposes of the processing;
• You withdraw your consent to the processing of your data and we base this processing only on the legal basis of your consent;
• You object to the processing;
• We have processed your personal data unlawfully;
• The data we hold is incomplete, inaccurate or out of date;
• We need to erase your personal data in order to comply with a legal obligation (under EU or Member State law) to which we are subject.
If we have made your data available to other entities, we are obliged to take all necessary steps to inform those entities that you have requested to have your data erased

** The right to data portability  allows you to obtain data that a data controller holds on you and to reuse it for your own purposes. The data must be received “in a structured, commonly used and machine-readable format

 

You can send your requests to exercise your above mentioned rights, together with evidence of your identity, by email at privacy@curewiki.com or by post to Curewiki, Data Protection Officer, Rue d’Angoussart 79, 1301 Wavre, Belgium.

We will examine the admissibility of your request based on the applicable Belgian and European privacy legislation. We will then inform you, in principle within a month, if we can answer positively to your request.

Third party applications and websites

This Website contains links to other websites operated by third parties, including but not limited to certain social media sites such as Facebook, Twitter, Linkedin, YouTube, etc. This Policy does not apply to any website, other than this one. Third party websites are governed by their own terms and conditions. You should therefore always carefully check the privacy and cookie policies of third party websites before accepting to be redirected to them.

We also display social media buttons on our Website.  When you click on any of those buttons, your personal data may be transferred to these companies and they may also set cookies or other tracking technologies on your browser.  The privacy policies and terms of use of each of those companies govern the collection and use of your personal data when you click on their buttons on our Website.

Prior to installing third party cookies or enabling you to click through to a third party website, we will have requested your consent to do so. Where consent was not given, the cookies will not be installed and the click through to third party websites will only occur after a pop-up notifying you that you are leaving the Curewiki space and requesting whether you wish to continue.

Notice for parents, guardians and children

Our website is intended for visitors who are at least 18 years of age, or the age of majority in their jurisdiction of residence. Curewiki does not knowingly solicit information from or market products or services to children. If you do not meet the age requirements set out above, please do not enter your Personal Data on this website.

How may Curewiki change this Privacy Notice?

As Curewiki expands and improves its website, or as legal requirements change, we may need to update this Privacy Notice. This Privacy Notice may be modified from time to time without prior notice. We encourage you to review this Privacy Notice on a regular basis for any changes. The date of the latest version will be identified at the bottom of the Privacy Notice.

Do you have any questions?

If you have any questions about this Privacy Notice or data protection at Curewiki, you can contact our Data Protection Officer either by mail:

Data Protection Officer
Rue d’Angoussart 79, 1301 Wavre, Belgium

or by e-mail at privacy@curewiki.com

You also have the right to lodge a complaint with the supervisory authority in the European member state of your habitual residence, your place of work or the alleged infringement of applicable data protection legislation:

In Belgium, the Supervisory Authority is:

Belgian Data Protection Authority
Rue de la Presse 35 / Drukpersstraat 35
1000 Bruxelles / 1000 Brussel

Tel. +32 2 274 48 00

Fax +32 2 274 48 35

contact@apd-gba.be
www.dataprotectionauthority.be