Research Registries

There are various research registries available on the different types of ataxias, some are clinical reported registries, and others are registries with patient reported information. 

You can take part in research studies as a patient via the London Ataxia Centre and join these following databases: 

• EFACTS: http://www.e-facts.eu/html/studies/home
• ESMI: https://www.neurodegenerationresearch.eu/wp-content/uploads/2015/10/Factsheet_ESMI.pdf

• DRPLA: https://www.ataxia.org.uk/wp-content/uploads/2022/11/DRPLA-NHBS_UCL-flye...

You can also join these patient registries as they include patient reported information that participants report themselves: 

• FA: https://www.curefa.org/research/patient-registry
• DRPLA: https://curedrpla.org/en/global-patient-registry/

You can find out more about some of these studies in our research section. You can ask our clinical team at uclh.ataxia@nhs.net if you wish to find our more about joining these registries.