1. Who is responsible for your data?
The data controller is NeuroBiome, operated by Jessica Perego.
Email: info@neurobiome.eu
Website: www.neurobiome.eu
2. Why are we collecting this information?
NeuroBiome uses questionnaires to better understand the needs and perspectives of patients, caregivers and clinicians. Responses may be used for service design, market validation, pilot planning and research planning.
3. What information do we collect?
Patient and caregiver questionnaire:
- Age group and sex assigned at birth.
- General health-condition category and time since diagnosis.
- Views and experiences relating to care.
- General bowel symptoms.
- Preferences, concerns and expectations.
- Affordability and payment preferences.
- Free-text responses and consent confirmation.
Clinician questionnaire:
- Country, professional role and work setting.
- Professional opinions on evidence, workflows, reporting, reimbursement and pilot participation.
- Free-text responses and confirmation.
Google Forms may also record submission timestamps.
NeuroBiome does not intentionally request names, medical-record numbers, postal addresses, telephone numbers or other direct identifiers. Please do not identify yourself, a patient or another person in any free-text field.
4. What is the legal basis for processing?
Participation is voluntary. NeuroBiome relies on consent under Article 6(1)(a) of the General Data Protection Regulation (GDPR). Where responses include health information, NeuroBiome relies on explicit consent under Article 9(2)(a) of the GDPR. You may stop before submitting the questionnaire.
5. Who can access the information?
Access may be provided to authorised NeuroBiome team members, professional advisers or advisory-board members who are subject to confidentiality obligations, and technology providers used to operate the questionnaires.
NeuroBiome will not sell questionnaire responses or use them for direct marketing. Any external reporting will use aggregated or anonymised information.
6. Google Forms and international transfers
The questionnaires are hosted using Google Forms and Google Workspace. Google may process data on servers outside the European Economic Area. Where this occurs, transfers will be handled using applicable safeguards.
7. How long will information be kept?
Responses that are identifiable or potentially identifiable will be retained for no longer than 12 months after the questionnaire closes. They will then be deleted or irreversibly anonymised unless a longer period is required by law. Aggregated, anonymised information may be retained.
8. How do we protect information?
NeuroBiome applies reasonable technical and organisational safeguards to protect questionnaire information. However, no digital system can be guaranteed to be completely secure. Please avoid including unnecessary personal identifiers in free-text responses.
9. Your data-protection rights
Depending on the circumstances, you may have the right to request information about your data, access it, correct it, request deletion or restriction, receive portable data, withdraw consent and lodge a complaint with a supervisory authority.
To make a request, contact info@neurobiome.eu. Because the questionnaires do not request names or email addresses, NeuroBiome may be unable to identify and remove a particular response without information such as an approximate submission date and non-identifying answers. Once information has been irreversibly anonymised and included in aggregate analysis, it cannot be linked back to an individual or removed. Withdrawal of consent applies prospectively.
10. Complaints
Please contact NeuroBiome first at info@neurobiome.eu so that we can try to resolve your concern. You may also contact the French data-protection authority, the CNIL, at www.cnil.fr/en. If you are elsewhere in the European Economic Area, you may contact your local data-protection authority.
11. Automated decision-making
Questionnaire responses are not used for automated decision-making and have no effect on your medical care or access to services.
12. Changes to this notice
This notice may be updated from time to time. The latest version will be published on this website with its revision date.
13. Contact
For privacy questions or requests, email info@neurobiome.eu.