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Old 30-12-17, 10:03 PM   #1
Trish
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Default Prevalence misquoted?

I know this Board is predominantly geared to 'Peer to Peer' involvement but I'd really appreciate a response from HDA as I think they will be the only ones with the answer. That said... If anyone else knows and I managed to miss something then please do shout out

Here goes...

I saw a number of the press reports on 11/12 December and I was surprised to see differences in the quoted numbers for UK prevalence.

Examples here are BBC news and Daily Mail quote the below:

BBC News

Quote:
About 8,500 people in the UK have Huntington's and a further 25,000 will develop it when they are older
Daily Mail

Quote:
The condition, which affects 8,500 adults in the UK and around 30,000 in the US, occurs as a result of a fault in the huntingtin gene.
The Guardian

Quote:
About 10,000 people in the UK have the condition and about 25,000 are at risk. Most people with Huntington’s inherited the gene from a parent, but about one in five patients have no known family history of the disease.
Evening Standard

Quote:
Roughly 10,000 people in the UK have Huntington's, and around 25,000 people have inherited a gene that means they are at risk of developing it later in life.
Here we see 8,500 and 10,000 being quoted. I would have been surprised if the HDA etc were not involved in writing the press release which surely the reporters would have needed to refer to. Are we saying 10,000 is a potential case of rounding up? Or is 8,500 an under-quote where the figures have expanded again?

I say again as 8,500 seems like a big jump from the previously reported figures from 'at least 6,700' quoted by the press in 2010. See BBC article HERE


And then there's the 2013 a BMJ paper....

BMJ paper can be seen HERE

Quote:
There are 46 638 400 people over the age of 21 years in the UK population. Applying our current prevalence estimate of 12.3 per 100 000 argues for more than 5700 people in the UK with diagnosed HD.
I would really love to know, as at December 2017, what IS the figure which should be used and what is that figure based on?

And the same applies to the 'about 25,000' figure.

That figure didn't seem to change whether the press were quoting 8,500 or 10,000 and that surely cannot be right given the additional (at risk?) people would surely correlate to the amount of diagnosed cases

The wording also varies with some saying 'will develop it' or 'have inherited' which suggests these are people diagnosed already rather than still being at risk . The words will and have inherited being points here.

Looking at it again, are they actually saying that we have 8,500/10,000 symptomatic people with the 25,000 people being diagnosed yet not symptomatic? If that is the case, we are potentially talking about an explosion of numbers in the future surely and more should be made of that.

Again, I would really love to know, as at December 2017, what IS the figure which should be used and what is that figure based on?

Any takers?
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Last edited by Trish; 30-12-17 at 10:08 PM. Reason: Added more text
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Old 31-12-17, 12:26 PM   #2
william
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Default Re: Prevalence misquoted?

Quote:
Originally Posted by Trish View Post
I know this Board is predominantly geared to 'Peer to Peer' involvement but I'd really appreciate a response from HDA as I think they will be the only ones with the answer. That said... If anyone else knows and I managed to miss something then please do shout out

Here goes...

I saw a number of the press reports on 11/12 December and I was surprised to see differences in the quoted numbers for UK prevalence.

Examples here are BBC news and Daily Mail quote the below:

BBC News




Daily Mail



The Guardian



Evening Standard



Here we see 8,500 and 10,000 being quoted. I would have been surprised if the HDA etc were not involved in writing the press release which surely the reporters would have needed to refer to. Are we saying 10,000 is a potential case of rounding up? Or is 8,500 an under-quote where the figures have expanded again?

I say again as 8,500 seems like a big jump from the previously reported figures from 'at least 6,700' quoted by the press in 2010. See BBC article HERE


And then there's the 2013 a BMJ paper....

BMJ paper can be seen HERE



I would really love to know, as at December 2017, what IS the figure which should be used and what is that figure based on?

And the same applies to the 'about 25,000' figure.

That figure didn't seem to change whether the press were quoting 8,500 or 10,000 and that surely cannot be right given the additional (at risk?) people would surely correlate to the amount of diagnosed cases

The wording also varies with some saying 'will develop it' or 'have inherited' which suggests these are people diagnosed already rather than still being at risk . The words will and have inherited being points here.

Looking at it again, are they actually saying that we have 8,500/10,000 symptomatic people with the 25,000 people being diagnosed yet not symptomatic? If that is the case, we are potentially talking about an explosion of numbers in the future surely and more should be made of that.

Again, I would really love to know, as at December 2017, what IS the figure which should be used and what is that figure based on?

Any takers?
Hi Trish

It's hard to know where the press get some of their information from but We are quoting around 8,500 people who have the HD+ gene. Estimates from around the world suggest that there are about 3 times as many people at risk of having the gene. If you read anything coming from the States, it will quote 30,000 people from there with the gene.
So it matches that around 25,000 people in the UK are at risk. The language that is used in the press is misleading as you point out. The Guardian will be relating to new mutations which will include Intermediate Alleles.
Since the Ionis announcement, we have seen a large referral rate and so have genetics depts and research sites. The HDA doesn't know everyone who has HD in the family but we are currently working with around 5,000 people who are diagnosed with the adult form, 103 with JHD, almost 6,000 who are at risk and almost 4,000 carers. These figures are set to rise because of the HTT lowering trials.
I hope that helps to give some understanding of the figures but they are very fluid and variable. The maths may not always add up.

Best wishes for 2018

Bill
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Old 31-12-17, 04:58 PM   #3
Trish
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Default Re: Prevalence misquoted?

Quote:
Originally Posted by william View Post
Hi Trish

It's hard to know where the press get some of their information from but We are quoting around 8,500 people who have the HD+ gene. Estimates from around the world suggest that there are about 3 times as many people at risk of having the gene. If you read anything coming from the States, it will quote 30,000 people from there with the gene.
So it matches that around 25,000 people in the UK are at risk. The language that is used in the press is misleading as you point out. The Guardian will be relating to new mutations which will include Intermediate Alleles.
Since the Ionis announcement, we have seen a large referral rate and so have genetics depts and research sites. The HDA doesn't know everyone who has HD in the family but we are currently working with around 5,000 people who are diagnosed with the adult form, 103 with JHD, almost 6,000 who are at risk and almost 4,000 carers. These figures are set to rise because of the HTT lowering trials.
I hope that helps to give some understanding of the figures but they are very fluid and variable. The maths may not always add up.

Best wishes for 2018

Bill
Thanks so much for clarifying Bill

That does help very much. It's very appreciated that you add to the head count the 'almost 4,000 carers' as that is an important number too. As an ex-carer, for want of a better title, it is fair to say the HDA & all the NHS & Social Care support services needed to factor me in. My welfare & recognition of need underpinned Steve's in many ways at the end of the day.

I know there will never ever be an exact figure. The only way that could ever be achieved is by giving every person in the UK a gene blood test lol. However, if figures are going to be cited I know you will agree the Press have a social responsibility to reflect them as accurately as possible.

Best wishes to you and the HDA Team too for 2018.

It's going to be a busy year that's for sure
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Old 31-12-17, 05:18 PM   #4
HDAModerator
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Default Re: Prevalence misquoted?

Quote:
Originally Posted by Trish View Post
Thanks so much for clarifying Bill

That does help very much. It's very appreciated that you add to the head count the 'almost 4,000 carers' as that is an important number too. As an ex-carer, for want of a better title, it is fair to say the HDA & all the NHS & Social Care support services needed to factor me in. My welfare & recognition of need underpinned Steve's in many ways at the end of the day.

I know there will never ever be an exact figure. The only way that could ever be achieved is by giving every person in the UK a gene blood test lol. However, if figures are going to be cited I know you will agree the Press have a social responsibility to reflect them as accurately as possible.

Best wishes to you and the HDA Team too for 2018.






It's going to be a busy year that's for sure
All good wishes for the new year to you and to all of the H.D. family from all of us.
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Old 31-12-17, 10:20 PM   #5
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Default Re: Prevalence misquoted?

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Originally Posted by HDAModerator View Post
All good wishes for the new year to you and to all of the H.D. family from all of us.
Thank you! xx
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