Does anyone know if our Ataxia Med Records are used for research? if not maybe they should be and if other countries agreed it would generate a huge amount of data. AI could scan the data it be interesting to see the results 🥸
I am similar to AI just one letter difference ie I’m NI 😂
Take care all.
When I went to Oxford Ataxia Centre, I was asked to take part in research. I signed lots of forms and lots of blood was taken. I have also taken part in the 100,000 genome project. I think they rely on us giving information when we have consultations.
I do all the surveys that Ataxia UK puts in their monthly newsletter. Hopefully it all helps.
Data protection makes patient registries extremely difficult.
Hi PaulLike cocoa I took part in the 100000 genomes project. Basically having blood taken then analysed in the lab. Also because my mum has handed the faulty gene down to me, she had blood samples taken too. She didn't display symptoms until early 60's, but now in her early 80's is bedbound. The aim is to show exactly what type of ataxia I have, atm it's still "unknown".
I always complete surveys but agree with about sharing records.
The National Disease Registration Service (NDRS) collects data on patients with cancer, congenital anomalies and rare diseases.This data is used by NHS clinical teams to help plan and improve treatments and healthcare in England. It also helps academics and charities with research and policy making.
Genome England do what you are saying. Look them up.
