Global Angelman Syndrome Registry

Background

Growing voices from 1,700 to 500k

The goal of this outreach is to inform patients with Angelman Syndrome about the power of their data for clinical research, and to advocate for a cure. It’s a hard sell to convince people that a boring form can change the world.

Samples

Example 1: Registry Landing Page

When the whole world is silent, even one voice becomes powerful. – Malala Yousafzia.

A voice speaking alone is quiet.

A thousand voices is a roar.

500,000 people are estimated to have Angelman Syndrome worldwide.

Imagine the power our voices have when we speak together.

Today, we’re asking you to amplify your voice.

To many of us, a data set might seem boring, even pointless. A series of answers to survey questions can’t change the world, or cure a disease – right?

There’s more to the story.

Data is what got us to the moon. Data is what has allowed us to develop cancer treatments. Data demonstrates how many people need a cure. Data is set to revolutionise healthcare as we know it. To us scientists, your data is gold. Your data is your story. If a picture is worth a thousand words, your answers to our survey are worth a cure.

Let us say that again: your data is your voice.

It is impossibly hard to live with a rare disease, and even harder when the person suffering is your beloved child. Before the internet, parents of children with a rare disease often had to go through their experience alone – but not anymore. For the first time in human history, you can join voices with every other patient worldwide, and you can be heard together.

We need more people from around the world to sign up to the Registry so that we can report accurate figures of those with Angelman Syndrome and advocate for a cure.

1 minute for you to sign up takes us 1 step closer to a cure.

Add your Voice

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Who are we?

We are innovators.
We are advocates.
We are parents.
We are scientists.

We are an online platform designed to capture patient information on Angelman Syndrome on a global scale.

We collect data from people like you who have lived experience of Angelman Syndrome and we use it to advocate for a cure and to provide researchers globally with access to a database of patients for research.

Thanks to technology, you can participate in this important research from the comfort of your own home rather than requiring your attendance at a specialised research clinic.

Out of 500,000 potential voices, so far we have collected 1,775 across 80 countries.

Add your voice now.

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You might be wondering, is my data safe?

The answer is yes. Here’s why:

• The Registry has Mater Human Research Ethics Approval and we abide by strict principles of safety and privacy.
• The Registry is GDP and HIPPA compliant.
• For data storage, we use Security-Cloud and AWS so that your data is secure.
• A strong governance committee with a principal investigator, a FAST representative, a parent/family representative and an ethics representative.
• We are the longest-running database for Angelman Syndrome and have built credibility since we were established in 2016. The largest study before this database was created consisted of just 300 people – we have already collected data from 1,775 people, which is more than 5 times larger.
• We have developed partnerships with global organisations to promote effective data capture

Get started with our convenient 1-minute intake form – then complete the rest of your information when you have the time.

Don’t miss your chance to get involved.

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Our Data

The Registry collects three types of information from families

• Basic demographics
• Current data/first visit
• Longitudinal data

Our data is authentic, accurate and reliable – and you can access it at any time. We work collaboratively to promote a cure and cutting-edge medical research for Angelman’s Syndrome.

This data is not only essential to demonstrate the need for a cure, but it also provides a much-needed registry of patients interested in potential clinical trials. We work with the Queensland University of Technology and can provide you with opportunities to contribute directly to a world where Angelman’s Syndrome is fixed.

Take 1 minute out of your day to move us 1 step closer to a cure.

Amplify our voices now.