Please see the Data Privacy and Protection policy linked within the survey. As a Registered Foundation in the Netherlands, the IKCC is fully compliant with European data protection legislation.

Data Retention

In the collection the responses to this survey we not will ask or retain any information that will uniquely identify the respondent or patient as an individual person. Beyond the responses given to the survey questions., our survey platform collects information, such as the time the respondent took to complete the survey, or whether the respondent was using a computer, tablet or mobile device. The IKCC may use this data in their analysis of the survey performance in order to improve future surveys. We will retain your responses for as long we believe it will be useful to provide insight into trends that may develop over time in the treatment of Kidney Cancer. We will also retain and use your information as necessary to comply with our legal obligations, resolve disputes, and enforce our agreements.

Use of Data

Any information shared with the IKCC during the response to a survey is owned solely by the the IKCC and will be used to help the International Kidney Cancer Coalition and local patient organisations gain a better understanding of the different issues that patients deal with around the world on a day to day basis. With this information, we will be better equipped to advocate for change to help improve the lives of Kidney Cancer patients everywhere.

Sale of Data

Data collected through surveys is owned solely by the IKCC. We will never sell or share any information uploaded to the system with any 3rd parties other than those retained to analyse the responses and report on their findings. We reserve the right to disclose information as required by law and when we believe that disclosure is necessary to protect our rights and/or to comply with a judicial proceeding, court order, or similar legal process.

Contacting Individuals

As we will not have any information that uniquely identifies the respondent or patient as an individual person we will not be able to contact them as the result of taking this survey.