As leaders of family associations affected by Angelman Syndrome and/or registry managers, you likely already have some data about your community—or can collect it relatively easily.
To avoid multiple data entries for families and to promote their visibility within local associations or existing registries, this solution relies directly on your own data.
The solution is based on self-reported data, and we fully trust you regarding the quality of the information provided. It is your responsibility to ensure its reliability, in order to guarantee dashboards that are consistent, useful, and truly representative of your community.
📥 Data Collection
To address key questions related to Angelman Syndrome at the national level, only a few essential pieces of information are needed for each individual:
- Age
- Genotype
- Sex
- (Optional) A geographic location adapted to the country’s context
(e.g., region/department in France, city in Latin America…) - (Optional) An internal identifier allowing, if necessary, re-identification within your local information system
Compliance with regulatory requirements means we must be extremely cautious and ensure that no data allows for patient identification.
✅ Tangible Results
- A dashboard in the local language, designed to be shared with the country’s family community
- A dashboard in English, intended for international partners (pharmaceutical companies, research organizations, etc.)
- A global consolidation of validated data, which can also be made available to pharmaceutical companies to better understand the Angelman community on a global scale
We collaborate with each association to jointly define the best data exchange interface and ensure that the final result fully meets your expectations.
You can review our data privacy policy to see how carefully we handle the information you share with us.
If you need more delails, please send an email to contact@angelmananalytics.org
Pharmaceutical companies particularly appreciate the clarity of the consolidated data and the visibility it provides on the Angelman community.
End users find the tool simple, intuitive, and very useful.
The timeline mainly depends on the initial availability of data from the Data Provider. Once the data is received, we can produce the dashboards within a relatively short timeframe (<1 week)
Yes, absolutely. However, for development efficiency, we currently only process lists that include at least 10 individuals with Angelman Syndrome.
It is essential to avoid duplicates in the dashboards. In this case, coordination between associations is recommended to achieve a consolidated and reliable representation of the national community. We have developed an aggregator that consolidates data rows from multiple sources. For more information, feel free to contact us at contact@angelmananalytics.org
It is important to reach out to the registry manager to explore how the data can be made usable within the scope of this project. A direct conversation is recommended to assess feasibility.
In the context of potential clinical trials or the creation of cohorts, it may be useful to inform a Data Provider that part of their community could be eligible for a given protocol. The ID field allows, if you choose, a controlled re-identification within your own system, while maintaining the confidentiality of the shared data.
We use a Python-based technical environment, with a server and database hosted on PythonAnywhere, along with Power BI for dashboard creation. All infrastructure costs are fully covered by the director of the publication
The processed data is pseudonymized, meaning it is impossible to identify a person based on the information used with the 5-anonimity (results are shown when at least 5 individuals match the criteria) No directly identifiable personal data is collected or stored. For the database, all the data are encrypted with authentification account.
Putting my professional skills to work for the Angelman community gives real meaning to my commitment. I want to help strengthen visibility, connections between families, and the attractiveness of our community to new stakeholders — especially pharmaceutical companies that may one day invest in innovative therapeutic options for all patients, regardless of age, genotype, or country.