MND Register

[Olivia H]

Others may disagree, but I believe strongly in the principle that you should have the choice to opt in to the MND Register, rather than now having to actively opt out.

[Ellie]

Fair opinion Olivia H

I guess the rationale is to gather the greatest volume of data possible and the opt-out basis supposedly yields this. There is no definite figure for the number of people living with an MND in England, Wales & Northern Ireland, which isn't ideal at a basic services planning level.

The MND Register in Scotland is 'by invitation', so you can decline or accept to be on it.

The MND Register in Ireland is includes everyone with a confirmed MND diagnosis - no opt-in, no opt-out, it's centrally gathered anonymised information - so is a complete record of the incidence, prevalence and clinical features of MND in the Irish population since 1994. The Register is often cited and used in modelling, all of which furthers our understanding of the impact of MND.

Data collection will always be a thorny issue, with very good reasoning... xx

[Olivia H]

Yes Ellie, very reasonable points and very interesting to see the variations between different regulatory bodies.
I think the fact it is not anonymised, in this version in England and Wales, is for me the major issue. The patient/clinician trust and personal/identifiable medical histories are not something that should be bundled up with other aspects of data/research, such as recording accurate numbers of cases, which would be perfectly reasonable data to collect. Would this be allowed for other conditions I wonder; just because no one has found a cure, mnd sufferers should not be treated less favourably. I feel this is not just an issue of confidentiality but also medical ethics. I was not asked to waive my confidentiality for recent cancer treatment and don't think as mnd sufferers we should suffer further detriment in this way. Of course many people will be happy to register, and that is fine, but this format does present some fundamental concerns

[denise]

Considering we are probably on all kinds of lists and registers just through what we search for on the internet having one that can be opted in or out of makes little difference . Any one notice how cynical I've become? 🤔

[Lynne K]

I registered about 2 year ago. I thought that researchers need data x

[Ellie]

I think the fact it is not anonymised, in this version in England and Wales, is for me the major issue.

It's not anonymised 😲😲😲 Why ever not? That's an entirely different kettle of fish...

There is nothing to be gained from attaching a name/identifiable number to data in this instance, but much to be lost.

[Suefromwakey]

Denise I told you to come and live in Wakefield,

Cynic Sue

[denise]

Dear cynic sue
just packing. Make room for two more.
Cynic denise formerly known as lady godiva