Which Rett Registry should you join?
Why are there so many Rett syndrome registries — and which one should you join?
It’s a fair question — we get it! Between the Rett Registry UK, the new European registry RSRT’s Global Registry, the US Natural History Study, and others around the world, it can feel like you need a spreadsheet just to keep track of them all.
Here’s what’s what 👇
🔹 Rett Registry UK
Run by Reverse Rett since 2014, this is one of the oldest and most active Rett syndrome registries anywhere.
Rett Registry UK has helped make the UK Rett-trial-ready by connecting families, clinicians, and researchers.
The data in this registry has already been used to identify and recruit families for multiple UK clinical trials of emerging treatments — and to build the evidence base for better NHS care.
Although it is called the Rett Registry UK, it includes patients from all over the world.
👉 If you’re in the UK, this is the one you should be part of: www.rettregistry.uk
🕘Time to complete: 10 mins
🔹 RSRT’s Global Rett Registry
- Launched in 2023.
- Global registry, built for parent-reported data in many languages, aligned with US FDA regulatory guidance and designed to support global drug development, including possible external-control arms in trials.
- Key point: Even if you are registered in a national registry, joining RSRT’s Global Registry can add your voice to global data and multinational research.
👉 Join from anywhere in the world. https://rettglobalregistryx.acrossmatrix.com/en-US/#/user-request
🕥Time to complete: 4 hours
🦘 The Australian Rett Syndrome Study (also known as “AussieRett”)
Launched in 1993.
It was one of the earliest large-scale, population-based Rett syndrome registries, covering all Australian families with a child born after 1976 which provided deep insights on progression, genotype-phenotype links and outcomes that many newer registries are still building.
If you live in or have strong connections to Australia, joining this kind of registry (if you qualify) adds a historic and incredibly valuable piece to the global Rett/MECP2 Duplication data puzzle.
👉 Find out more here: https://rett.thekids.org.au/join-now/interrett-participation/
🔹 rettX (Rett Syndrome Europe)
Launched in 2025.
RettX is a pan-European registry run by Rett Syndrome Europe, aiming to harmonise data from across the continent.
It’s early days — the first pilot started in Spain — but the goal is to create a Europe-wide picture of Rett syndrome that can inform research, policy, and access to treatments across borders.
🔹 US Natural History Study (NHHS)
- Founded: 2003
- Enrollment began: 2006
Run by the International Rett Syndrome Foundation and the National Institutes of Health, this registry collected detailed clinical data from families in the United States.
It’s been vital for understanding disease progression and supporting US-based clinical trials.
The study itself has been completed or is in a long-term follow-up phase, as data collected over many years (up to 14 years of follow-up from approximately 1,100 patients) are now being utilized by researchers and pharmaceutical companies like Taysha Gene Therapies and Neurogene.
A follow up digital registry program is underway through US based clinical Rett centres. You have to be part of a centre and based in the US to participate.
Read more about this study here: https://www.rettsyndrome.org/rett-syndrome-registry/
🔹 Other national registries
There are also country-specific registries in places like Italy, and Israel — all collecting similar data for their own health systems and trial networks.
🧩 Why can’t the registries all just talk to each other?
Because each registry runs under different data laws, ethics approvals, and governance structures.
They can’t simply merge data or share identifiable information — even though the goal is the same: faster, safer access to treatments.
That’s why it’s so important that as many families as possible register in their own national registry.
When the data is complete and current, it helps researchers design better studies, helps doctors improve care, and helps regulators see where treatment demand exists.
💡 In short:
Every registry plays a part in the global Rett puzzle.
The more complete each piece is, the faster we can build the full picture — and move closer to treatments for every person with Rett syndrome, everywhere.