Research Ethics
Ethical principles guiding our research and data practices
Last updated: October 2025
Our Ethical Principles
Privacy First
Your privacy and data protection are our highest priorities. We never compromise on security or anonymity.
Transparency
We are completely transparent about how we use your data and who we share it with for research purposes.
Consent
Research participation is always optional and you can withdraw your consent at any time without affecting your service.
Beneficence
Our research aims to benefit people with fibromyalgia and advance understanding of this condition.
Research Framework
Purpose
Our research aims to advance understanding of fibromyalgia by analyzing patterns in symptoms, medications, and lifestyle factors across our user community.
- • Identify effective medication combinations
- • Understand symptom patterns and triggers
- • Improve treatment recommendations
- • Support clinical research initiatives
Data Sharing
We only share anonymized, aggregated data with qualified researchers and institutions.
- • Universities conducting fibromyalgia research
- • Healthcare organizations improving patient care
- • Pharmaceutical companies developing treatments
- • Government agencies supporting public health
Anonymization Process
All data is rigorously anonymized before sharing using multiple techniques:
- • K-anonymity protection (minimum 20 individuals per group)
- • Age banding and geographic generalization
- • Removal of all direct identifiers
- • Statistical noise addition where appropriate
Consent Management
Research Consent Statement
""I consent toquot;I consent to the use of my de-identified data, together with data from other participants, for research and for licensing to universities, healthcare organisations and companies to advance understanding and care of fibromyalgia. My identity and contact details will never be shared. I can withdraw this consent at any time in the consent dashboard. Withdrawal stops future use and sharing. Past anonymised releases cannot be recalled."
Opt-in Only: Research participation is completely optional and defaults to "No"
Revocable: You can withdraw consent at any time through your account settings
No Impact: Withdrawing research consent does not affect your service access
Audit Trail: All consent changes are logged with timestamps and IP addresses
Data Protection Standards
Technical Safeguards
- • End-to-end encryption
- • Secure data centers
- • Regular security audits
- • Access logging and monitoring
Administrative Safeguards
- • Staff training on data protection
- • Strict access controls
- • Regular policy reviews
- • Incident response procedures
Legal Compliance
- • UK GDPR compliance
- • HIPAA-equivalent controls
- • Data subject rights
- • Regular compliance audits
Research Ethics
- • Institutional review board approval
- • Informed consent protocols
- • Data minimization principles
- • Beneficence and non-maleficence
Research Partners
Partner Requirements
All research partners must meet strict ethical and legal standards:
- • Institutional review board approval for their research
- • Demonstrated expertise in fibromyalgia research
- • Commitment to data protection and privacy
- • Agreement to use data only for approved research purposes
- • Regular reporting on research progress and outcomes
Current Partners
We are currently establishing partnerships with leading fibromyalgia research institutions. Partner information will be updated as agreements are finalized.
Your Rights as a Research Participant
Right to Information
You have the right to know how your data is being used and who it's shared with.
Right to Withdraw
You can withdraw from research participation at any time without penalty.
Right to Access
You can request information about research findings that used your anonymized data.
Right to Complain
You can raise concerns about research practices through our ethics committee.
Ethics Committee Contact
If you have questions about our research ethics or want to raise concerns, please contact our ethics committee:
Ethics Committee: ethics@fibronex.com
Research Director: research@fibronex.com
Data Protection Officer: dpo@fibronex.com
Address: Fibronex Ltd., Ethics Committee, UK
Our research ethics are reviewed annually and updated as needed to reflect best practices and regulatory requirements.