Privacy Policy
At Angelman Analytics, we value your trust and are committed to handling your personal information with care, transparency, and in full compliance with applicable data protection regulations.
This Privacy Policy explains how we collect, use, and protect your data, the purposes of processing, and your rights regarding your personal information.
1) Data Controller
The personal data collected on the Angelman Analytics website are processed by Anthony Moisan, acting as the data controller.
For any questions regarding your personal data, or to exercise your rights, please contact us at:
📧 contact@angelmananalytics.org
2) Purposes and Legal Bases for Processing
Different processing activities are carried out for distinct purposes:
| Purpose of Processing | Description | Legal Basis |
|---|---|---|
| Visualization of scientific publications | Display of ongoing and past publications related to Angelman syndrome, based on public data from PubMed. | Publicly available data |
| Visualization of clinical trials | Display of ongoing and past clinical trials related to Angelman syndrome, based on public data from ClinicalTrials.gov. | Publicly available data |
| Mapping of people with Angelman syndrome | Display of pseudonymized, non-identifiable data on individuals living with Angelman syndrome (e.g., age, genotype, sex, geographic region). | Consent from the data provider |
A data provider refers to any entity (association, institution, or group) that provides pseudonymized data at a regional or national level.
3) Categories of Data Collected
From PubMed:
abstract, article_title, institution, journal, journal_abbrv, pmid, pub_year
From ClinicalTrials.gov:
BriefSummary, City, Country, Current_Status, EligibilityCriteria, End_Date, EnrollmentInfo, Facility, IsDeletion, IsID, IsMosaic, IsMutation, IsUPD, Lat, Lon, Maximum_Age, Minimum_Age, NCT_ID, Phases, Sex, Sponsor, Start_Date, State, StudyType, Study_Name, Zip
From Angelman community mapping (pseudonymized data):
age, genotype, sex, geographic location (e.g., region/department in France, or country/city in Latin America).
4) Data Retention
Data are retained for the lifetime of the website and deleted within one month after the last recorded activity.
Each data provider may request deletion of their data (right to be forgotten) at any time.
5) Data Recipients and Hosting
Data are hosted by PythonAnywhere, with storage located within the European Union.
Analytical visualization is performed using Microsoft Power BI.
For more details, please refer to their respective privacy policies:
No data transfer is made outside the European Union.
If such a transfer were to occur, it would be carried out in accordance with the safeguards provided under the GDPR (e.g., EU Standard Contractual Clauses).
6) Rights of Data Providers and Users
You have the following rights regarding your personal data:
- Right of access, rectification, and erasure (right to be forgotten);
- Right to object, restrict processing, or request portability;
- Right to withdraw your consent at any time.
You may exercise these rights by contacting us at contact@angelmananalytics.org.
In the event of a dispute, you also have the right to file a complaint with your local data protection authority — in France, the CNIL (www.cnil.fr).
7) Security and Confidentiality
All data are encrypted and stored securely. Passwords are hashed, and all communications are conducted via HTTPS.
Access to web services requires authenticated user accounts.
8) K-Anonymization for Mapping
A 5-anonymity rule is applied to all mapping data to ensure that no individual can be identified when fewer than five records meet the same filtering criteria.
9) Cookies
This website uses only essential cookies required for its operation.
No tracking, advertising, or analytics cookies (Matomo analytics) are used without explicit consent.
You can manage your cookie preferences through your browser settings.
10) Updates
This policy may be updated from time to time to reflect changes in our data practices or legal requirements.
Last updated: October 2025