Our Core Privacy Commitment:
We never sell, rent, or trade your personally identifiable information (such as your name, email, or IP address) to commercial data brokers, advertising networks, or consumer marketers.
With your explicit consent, we may contact you regarding IRB-approved clinical trials and academic studies for which your profile may qualify, or share strictly de-identified, aggregated statistical metrics with accredited scientific and biopharmaceutical research sponsors studying DANC and ACKR1 biology.
1 Who We Are & Data Controller Identification
DuffyNull.com operates as an independent, open health science and educational initiative dedicated to translating peer-reviewed hematology research into clinical decision stewardship and patient advocacy.
For data protection and governance purposes, the Data Custodian is the DuffyNull.com Initiative Team. All data inquiries, rights, and erasure requests can be submitted directly through our automated self-service system below.
2 Voluntary Health Data Stewardship & Security
When you voluntarily submit information through our Patient Registry or Clinician Inquiries, you provide self-reported health parameters and contact identifiers. This includes:
- Contact Identifiers: Name, email address, country of residence.
- Laboratory & Biological Metrics: Self-reported Absolute Neutrophil Count (ANC), White Blood Cell count (WBC), and known or suspected Duffy phenotype status (e.g., Fy(a-b-)).
- Clinical History: Self-reported history of hematology consultations, diagnostic bone marrow examinations, or benign neutropenia diagnoses.
Basis for Processing: We process voluntary health parameters strictly based on your explicit, freely given, and informed consent (satisfying GDPR Article 9(2)(a) standards for special category health data) provided via the registration form checkbox.
HIPAA Regulatory Boundary: DuffyNull.com is an independent health science advocacy and educational platform. We are not a HIPAA-covered entity (such as a hospital, healthcare provider, or health insurer) nor a Business Associate under 45 CFR § 160.103. All data is voluntarily self-reported by users. Nonetheless, we maintain strict administrative, technical, and physical safeguards consistent with global healthcare data stewardship standards.
3 How We Use Your Data & Legitimate Research Monetization
We utilize collected registry data exclusively for the following defined purposes without legal contradiction:
- Direct Research & Clinical Trial Notifications: If your self-reported profile (ANC, Duffy status, country) matches eligibility parameters for an IRB-approved clinical study (such as clinical trial inclusion criteria for oncology or benign hematology), we may send you an email alert describing the study with direct links to contact the certified clinical trial site. You choose whether to contact them.
- De-Identified Aggregated Epidemiological Insights: We compile strictly non-identifiable, aggregated population metrics (e.g., "78% of registered patients reported ANC between 0.9 and 1.3 × 10⁹/L across 14 countries") to present to biopharmaceutical researchers, academic societies, and health policy groups to advocate for inclusive diagnostic thresholds.
- Legitimate Monetization Model: DuffyNull.com sustains its global educational mission through accredited institutional trial matching notifications and licensing aggregated, fully anonymized statistical cohorts to life science sponsors studying ACKR1 biology. We never sell individual or identifiable patient records.
- Educational Dissemination: Delivering published hematology summaries, ASH guideline updates, and platform tools.
4 Data Storage, Retention & Security
Registry submissions are stored in secured database environments protected by automated rate limiting, honeypot anti-bot validation, SSL/TLS 256-bit encryption in transit, and restricted administrative access. We retain voluntary registry records for as long as you maintain an active registry interest or until you request deletion.
5 Your Rights: Access, Rectification, and Permanent Data Removal
Under international data protection standards, you possess unequivocal rights regarding your personal information:
- Right to Withdraw Consent: You may revoke consent at any time without affecting past lawful processing.
- Right of Erasure: You can request complete and permanent deletion of your registry record at any moment.
- Right to Data Portability: You may request a machine-readable export of your submitted information.
Want your registered email, metrics, or clinical notes removed from our records?
6 Medical & Decision Support Safe Harbor Disclaimer
DuffyNull.com is an educational and observational research portal, not a licensed medical practice, hospital, or clinical diagnostic laboratory. No content on this platform constitutes medical advice, clinical diagnosis, or treatment prescription.
The interactive calculators and documentation templates provided on this site are designed strictly as educational decision-support tools reflecting published, peer-reviewed medical literature (Merz et al., JAMA 2023; Hibbs et al., JAMA Netw Open 2024; ASH DANC Initiative). They do not replace the individualized medical judgment of a qualified licensed healthcare provider.