PDA

View Full Version : MND Register



Doug Carpenter
2nd April 2019, 09:58
When I was diagnosed, I assumed that my consultant added my details to the UK MND register, especially as he is one of the project leaders.

This may not have been the case. So two years on I've just registered.

The register seems to be such a basic first step in gathering information about our disease that I am surprised there are so few entries - about 1000 out of a population of ca. 5000 patients

Registration is quick and easy:

https://mndregister.ac.uk/#

Doug

Peckham Boy
2nd April 2019, 11:02
Thanks for the information you have supplied

I have just signed up today

PB

Doug Carpenter
2nd April 2019, 11:10
Brilliant PB!

Every little helps.

Doug

Ellie
2nd April 2019, 12:12
It's such a shame that your MND Register is based on self-registration - it's an unrivalled opportunity to gather so much important and relevant data.

For comparison, the Irish MND Register, rolled out in 1995, is compiled by searching Hospital Data for all major hospitals, the Death Register to capture those who died soon after diagnosis. Data providers are Consultant Neurologists, Neurophysiologists, Geriatricians & community-based Clinical Professionals - meaning it's automatic (anonymised) enrollment done by the diagnosing doctor/clinician, not by the person with the MND.

It's managed by the National MND Clinic and overseen by the Health Regulator. It also contains a DNA bank.

The data collected from such a long-running register is often cited in research and other papers. Our population is small, so it's a shame the UK MND Register (Scotland has its own) doesn't capture the whole MND population as it would have a much larger data capture.

Love Ellie.

Doug Carpenter
2nd April 2019, 12:44
Thanks Ellie.

You're right! Your system sounds so much better and comprehensive.

I was very surprised registration wasn't automatic in England.

Apparently the register is funded by the MNDA. I feel they should publicise it more.

I'll ask Mrs May to include it in the backstop!

Doug

Deb
2nd April 2019, 13:13
Good Luck with that one, Doug ! ��

I have just registered but like you I assumed it would be automatic, so thanks for sharing the information.

Love Debbie x

Kayleigh
2nd April 2019, 15:38
Thanks for your post about the MND Register Doug.

Perhaps there is already some collation of data about MND patients (whether they opt into the Register or not) - otherwise how could the current sum total of approx. 5000 MND patients be arrived at?

Ellie
2nd April 2019, 16:05
Hi Kayleigh,

The prevalence of MND in the UK is known to be just over 7 people per 100,000, so that's where the approx 5,000 number of people living with an MND comes from.

Prevalence is the actual number of cases of people alive with the disease during a period of tie, e.g. now.

Love Ellie.

Barry52
2nd April 2019, 16:17
Like Doug I had assumed the data would have been recorded by the clinic where you are diagnosed but I found out that this was not the case. I have been encouraging our friends attending Nottinghamshire and Lincolnshire groups to register their details but we must remember that not everyone has access to the internet.

Barry

Dis1960
4th April 2019, 10:44
Now registered. A bit disconcerting that the drop down still listed Hope Hospital but not Salford Royal

nunhead_man
22nd April 2019, 14:42
I have signed up too - but I am with you Ellie - I would have thought that the MND centres ought to be asked who the people are

After all, they were paid for in some part or other by the ice bucket challenge and I am sure they would know most of the folk with MND based on my experience of that is where I ended up once the various medical professionals I had contact with had some idea what I had.

I guess there will be some sort of data protection issue about lifting the names wholesale, but the centres could at least ask people for permission to forward their details?'

Dis1960
19th May 2019, 17:20
Just a reminder - Please register if you can

bakeit Forum