A Research Study for People With Glioma (Brain Tumor)

What data do we collect?
When you register an account, you will be asked to fill out data.

• We will request your name, address, postcode, and town/city to contact you; for example, to make appointments or send you information.
• In addition, we will need your phone number to contact you and send you a reminder message.
• To create your account, we will ask for your email address. We also need this information to contact you by email; for example, to send you confirmation and reminder emails. In addition, we send emails to inform you of any new trials.
• We need your address, postcode, and town/city in order to display local trials or studies within a certain radius.
• Your time zone and locale are processed to display the correct time and language for you.
• Your IP address is processed to protect your account.

These personal data are necessary for the intended and actual performance of an agreement. Without this information, we will not be able to enter into an agreement or use you as a trial subject. 

Research purposes: “special personal data”
In addition, certain information is requested for research purposes in order to see whether you are a match with the trial in question and to carry out the study. This information includes personal data with respect to your gender, age, medication use, fertility, height and weight, alcohol consumption, smoking habits, and other medical data and/or data concerning health.

A large part of this information is ‘special personal data’ in the sense of the GDPR. Because this is sensitive data, we handle it with extra care and are, among other things, required to inform you via this form and ask for your consent to store and process the data.

You always have the option to withdraw your consent. However, this means that we will no longer be able to match you to the study for which you have registered.
Additionally, you have the option to have your data deleted, viewed, or corrected.
In the privacy statement, you can read how to exercise your rights.

PRIVACY STATEMENT

Feb 2025 v 2.4

About us

Link2Trials determines the means and purposes of processing your personal data in compliance with applicable U.S. privacy laws, including protections for health-related data under the Health Insurance Portability and Accountability Act (HIPAA).

Link2Trials is located at Hilversum, Neptunusstraat 16, 1223HL and is registered with the Chamber of Commerce under number 32122355. We have a Data Protection Officer registered with the Dutch Data Protection Authority (Autoriteit Persoonsgegevens), who can be reached at privacy@Link2Trials.com.

What data do we collect and for what purposes?

When you register an account, you will first be asked to fill in the following data:

• To create your account, we will ask you for your email address and password.

After confirming your email address, we will ask you to supplement your profile with the following information:

• We will ask you for your name, address, postal code and place of residence so we can contact you, for instance to arrange appointments or to send information.
• In addition, we need your telephone number in order to be able to contact you by telephone and send a reminder message. We use your address, postal code and place of residence to be able to display (local) trials or studies within a certain radius from your address.
• Your time zone and locale are processed to display the correct time and language for you.
• Your IP address is processed to protect your account.
• We also need your already-stored email address to contact you by email, for example to send confirmation and reminder emails. We also send emails to alert you to new studies.

We process the above-mentioned data for our legitimate interests or to provide our services to you (the agreement). In addition, certain special personal data are requested for research purposes, in order to assess whether you match the requirements applying to the relevant study and to subsequently conduct the study with you. The data that may be requested for research purposes include personal data relating to your gender, age, use of medication, fertility, height and weight, alcohol consumption, smoking behavior and other medical and/or health data.

If you register for a specific study, part of the above data, including the data related to your health (special personal data), will be requested. After all, without these special data, we cannot match you with any of the available studies. The type and quantity of special personal data may vary per study, because we only collect the data necessary for that specific study. We never use your data for automated decision-making or profiling.

We ask for your consent

We may only process special personal data if you give your consent for this. When creating an account, we therefore ask you for your explicit consent for processing the special and other personal data you have provided for the above purposes. You can withdraw this consent at any time.

With whom do we share your personal data?

Your personal data may be provided to third parties who will take on part of the processing on behalf of Link2Trials. For example, we use an external party to provide dedicated hosting for the personal data. This party is certified to store medical data. These parties are service providers within the meaning of the CCPA.

After you have registered for a specific study or a specific project, your special and other personal data will be shared with research institutions, which may or may not contact you to participate in the specific study or project.

We verify in advance that these institutions are recognized research institutions that comply with national legislation and regulations. In principle, your personal data will only be transferred to research institutions within the country in which you are resident.

The collection and processing of personal data for a particular clinical trial is governed by contractual provisions between Link2Trial and the sponsor of the clinical trial. The sponsor of the clinical trial is typically viewed as a data controller for such processing activities. Link2Trials does not share any of the direct identifiers (e.g. names, address) that you may submit via the pre-screener with the sponsor, unless the sponsor of the study is also the research institution that conducts the study.

Use of the Meta Conversions API

We use the Meta Conversions API to measure the effectiveness of our advertising campaigns on Meta. We do this only when you accept marketing cookies.
We only share the necessary information for tracking conversion data, including anonymous user identifiers and the date and time of interaction. This data may be stored on Meta's servers, which may be located in the USA. You can always change your marketing cookie preferences via the button on our website.
Important: No direct medical or health data is ever shared with Meta.

Protecting your personal data

We have taken appropriate technical measures to protect personal data against loss or other forms of unlawful processing. These measures ensure a level of security appropriate to the data that we process. We ensure that the account uses a secure/encrypted SSL connection. In addition, we use two-factor authentication and encrypt your password.

Retention period

We collect and store personal data based on purpose and applicable retention periods:

1. Study-specific data: When you sign up for a study, we collect study-specific data (such as study questionnaires and related information). This data is stored for 90 days after the study ends and is then securely deleted.
2. Account data: If you create an account in our database to be considered for future studies, your personal data will be stored until you delete your account. If your account remains inactive for 10 years, it will be automatically deleted. You can delete or update your account information at any time by logging into your account and modifying your personal data or deleting your account. You can also request account deletion by contacting us at info@link2trials.com.

Rights

You have the right to inspect your personal data and the right to rectify your personal data. If you want to know which of your personal data we process, you can submit a written request to access your data. Should your data be incorrect, incomplete or irrelevant, you can ask us in writing to alter or supplement your data.

If you have given us consent to process your data, you are always entitled to withdraw this consent. The withdrawal of this consent does not prejudice the lawfulness of our processing on the basis of your consent, which took place prior to this withdrawal.

You also have the right to have your personal data erased, the right to restrict their processing and the right to object to their processing. In addition, you have the right to transfer your data or to make them transferable (the so-called “right to data portability”). You can also submit a written request to this end.

In this context, “written” includes by email. You can email your request to us via helpdesk@link2trials.com. We will process your request as soon as possible, but always within four weeks.

You also have the right to submit a complaint about the way in which we handle your data. You can submit any such complaints to the Federal Trade Commission.

Changes

We reserve the right to make changes to this privacy statement. The changes shall enter into force on the date announced for their entry into force.