- No Data you provide will be used to market to you.
- Personal Data you provide will be redacted or anonymised before passing on to third parties for research.
- We may occasionally contact you for the purposes of administration – such as payment, profile verification and issue resolution.
- Your data and will not be sold to other organisations.
- Control of data you provide is protected by the European General Data Protection Regulations, regarded as the the strongest privacy controls worldwide.
1. About the Data We Collect
As a member of the SurveyEngine Patient community you will be invited to participate in online surveys related to your health condition – or of those you care for.
These studies are usually either: pure academic research, observational clinical trials or development of government policies. In each survey you will be given full information as to the purpose of the study and may always choose whether to participate.
When you join the Pateint Community, we collect the following personal identifying information: your name, postal service address, email address, IP address, and phone number. We may also collect the following information to better target you for the appropriate surveys: patient or caregiver status, gender, birth year, preferred language, disease/condition, disease type/subtype, medications, and devices.
|Information Collected||How Information is Used||Lawful Use|
|During Registration Name|
Email Address Caregiver Status Medical condition Region Preferred Language
|Used to contact you regarding updates and opportunities to participate in surveys and to communicate in the appropriate language. Never disclosed to third parties.||Consent- provided at time of registration.|
Anonymous unique key
|Data provided within surveys is linked to your personal data through an anonymous ID. Linking data is never disclosed to third parties.||Not required as data is not Personally Identifiable Information|
|Within Surveys requiring personal interviews Name|
Additional information related to the specific study.
|Collected during the screening process for certain studies requiring in-person, telephone or videosharing in-depth interview. Disclosed to authorised SurveyEngine project managers in order to contact you.|
Data is never disclosed post interview
|Consent – provided by you during the screening process.|
|Collected by SurveyEngine for the processing of compensation. Disclosed at time of payment to third party payment processor to process payment on behalf of SurveyEngine.||Consent and/or Legitimate interests – for the processing of compensation.|
|Adverse Event ReportingName|
|Collected by SurveyEngine during registration and participation in surveys. In rare circumstances when an adverse event is identified during a study, this data is disclosed to the study sponsor as required by law to contact you for the reporting of such adverse events.||Consent – provided by you to at time of registration.|
|Collected by SurveyEngine from your browser to ensure quality, limit participation to one survey, to validate your country and to detect and prevent fraud.||Consent and/or Legitimate interests – for the processing of registration, quality and study targeting.|
We retain all information in our systems until specifically requested by you to delete it.
2. Data Collected in Surveys
SurveyEngine asks members for their input about a variety of policies, treatments and services by through online surveys. Based on the requirements of the survey, SurveyEngine contacts individuals who have registered and invites them to participate.
Any additional information collected for a specific survey will be used for research purposes only. In most cases, the study requires only your responses which are provided anonymously. In some surveys, your name and telephone number will be requested if the survey requires an in-person interview. Sometimes your email is included to schedule the interview. In the case the project sponsor or another agent is conducting the interview, they will have executed an agreement that they to only use this information for those specific purposes relevant to the study.
By registering on the community.surveyengine.com site, you agree to receive emails from us, such as survey invitations and reminders, responses to inquiries that you submitted on our site, and inquiries regarding your status as a member of the community.
SurveyEngine will never provide your payment details to third parties. In the event of a major change to the corporate structure such as sale or voluntary administration, all members will be notified.
3. Email Communications from SurveyEngine patient community
SurveyEngine does not send unsolicited commercial emails. As a registered German company, we are required by law to comply with the provisions European General Data Protection Regulations, requiring a lawful basis for contacting you, namely consent. You may at any time revoke your consent, review any personal data already collected or request that your personal data be permanently deleted.
4. Changing your Personal Information
If you wish to change any personal information you provided during registration, send an email to firstname.lastname@example.org outlining the nature of the change you require.
5. Opt Out
Community members may decline to respond to a survey or opt to drop panel membership at any time. We respect the decision to decline participation and will attempt to hinder your wishes. Members who prefer not to complete a given survey need not do so. If you choose to stop participating in our research surveys, you may unsubscribe from our survey invitations at any time by sending and email to email@example.com with the subject header ‘UNSUBSCRIBE’.
Once you have unsubscribed, you will not be invited to any further studies. Please be aware that even if you unsubscribe, we may maintain certain information in your registration profile for ordinary business purposes such as for tax purposes and to keep a record that you opted out.
6. Safety and Security
We use various measures to secure your data. We use HIPAA-compliant servers and secure file sharing service to transmit data. We have implemented technical safeguards to protect Personal Data from loss, misuse, and unauthorized access, disclosure, alteration, or destruction. For example, electronically stored Personal Data is stored on a secure network with firewall protection, and access to our electronic information systems requires user authentication via password. We also employ access restrictions, limiting the scope of employees who have access to Personal Data. We use secure encryption technology in transit and at rest to protect your personal data.
7. Children’s Privacy
We do not seek to collect any personal information from children under 16 years of age. Registrations from applicants indicating they are under 16 years of age will not be permitted to join the community.
10. Contact Information
If you have any questions or comments please do not hesitate to contact our data protection officer
Data Protection Officer: firstname.lastname@example.org
General Queries: email@example.com
Viktoria-Luise-Platz 7, Berlin 10777, Germany
+49 30 201 692 320