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CLL Society / CLL Ireland 2020 Patient Survey: MRD Testing and Limited Duration Therapy
CLL Society is asking for patient and caregiver participation in a survey which will help us learn about knowledge, attitudes, and preferences about MRD (measurable residual disease or minimal residual disease) and limited duration (also known as fixed duration) therapies. Our goal is to learn more about what our patients know and think so we can best serve you in the future. Please take a few minutes to complete this important survey.
Your survey responses will be treated in confidence and used only for statistical/research purposes. If you wish to participate, you are entitled to all rights included in the General Data Protection Regulation (GDPR), such as the right to access your information. You can withdraw your consent for any future processing of your personal information at any time by sending an email to firstname.lastname@example.org.
The data collected will be anonymized and combined with other people’s responses, so that identification of individual respondents will not be possible. The data will be sent directly to the nonprofit CLL Society for statistical processing.
The CLL Society acknowledges CLL Ireland’s role as a joint controller for the limited processing operation of the collection of the survey responses in the manner detailed in the Joint Controller Addendum. There will be no personal identifying information asked.
Most of the survey data collected by CLL Society does not include personal identifiable data. CLL Society will retain information that includes personal identifiable data for up to two years. At the end of the data retention period, for all surveys with personal information, we will ensure that all data is properly anonymized.
Use of Data
All survey responses will be treated in confidence and used only for statistical/research purposes. The data collected will be anonymized and combined with other people’s responses, so that identification of individual respondents will not be possible. If you wish to participate, you are entitled to all rights included in the General Data Protection Regulation (GDPR), such as the right to access your information. You can withdraw your consent for any future processing of your information. By completing the survey, you are consenting to have your anonymous data processed in bulk with all data, stored in a secure server in the USA.
Sale of Data
Data collected through surveys will be managed solely by the CLL Society, a nonprofit organization in the United States. CLL Society will never share information uploaded to the system with any 3rd parties. We reserve the right to disclose your personally identifiable 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.
CLL Society will not contact you based on survey participation. We have opt-in email communication, which includes the option to unsubscribe at any point.