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Paul Wicks · Posted: Fri Apr 21, 2006 8:59 am Post subject: The MNDA DNA Bank

Have you heard about our exciting research project?

The MND Association's DNA Bank and National Database are collecting DNA samples from people living with MND. These samples will help us understand more about the underlying causes of MND, which will help scientists develop more effective treatments. They will also tell us about the causes of the rare, inherited forms of MND.

If you have MND and experienced your first symptoms after January 2002 you may be eligible to participate in this research project. Your partner, carer or family member may also be eligible to participate.

If you agree to take part a nurse will take a blood sample from you and ask you some brief questions about when you developed MND. DNA will be removed from the blood sample and stored for us in future research. Information you give us will remain confidential.

What people with MND have told us

"People have known about MND for more than 130 years, but until now research into it has been limited. The DNA Bank will help the medical profession to find out more about MND and in doing so, help people with MND and our families."

"I know it won't help me, but hopefully it will help others in the future."

"I am optimistic that there will be a cure for MND one day. It is a challenge for the 21st century and I think science will find a way."

Where can I find out more?

Call our DNA Bank information line on 01604 611 880 for more information or to request an information sheet.

www.mndassociation.org/research/dna_bank/

Talk directly to one of the nurses involved:
London (King's College Hospital)
Barbara Coote
Tel: 0207 848 5354
Email: barbara.coote@iop.kcl.ac.uk

Birmingham (Queen Elizabeth Hospital)
Sarah Dharjwal & Rachel Hornabrook (job share)i
Tel: 0121 627 2085
Email: sarah.dhariwal@uhb.nhs.uk & rachel.hornabrook@uhb.nhs.uk

Sheffield (Royal Hallamshire Hospital)
Hannah Nixon
Tel: 0114 226 1490
Email: h.nixon@sheffield.ac.uk

It is not necessary to live near one of the three co-ordinating centres to participate in this nationwide reserach project. Please contact the nurse at the nearest Centre to you.

Jeannie · Highly Active Contributor Joined: 28 Nov 2004 Posts: 2299

why cant pals participate if their symptoms were before 2002 ?
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Best wishes

Jeannie

If I fail, if I succeed at least Ive lived as I believe.

"As I grow to understand life less and less, I learn to love it more and more."

ALS onset June 2000, dxed July 2001, I am 32 yrs old.
Living and loving everyday regardless of ALS
I'm singing and dancing inside!

Paul Wicks · Posted: Fri Apr 21, 2006 10:19 am Post subject:

Not sure. Probably something to do with capturing a homogenous cohort of patients rather than a retrospective hodge-podge. But they're sticking to that one very closely I'm afraid.

Erica · Posted: Sat Apr 22, 2006 6:32 pm Post subject:

Paul,
What if the symptoms I first reported to my GP happened after Jan 2002 but there were symptoms possibly related to the onset of MND 2 years previously? Confused

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May the sunshine keep breaking through for us on cloudy days

Paul Wicks · Posted: Sun Apr 23, 2006 11:58 am Post subject:

Not sure. Best bet is to phone your nearest DNA Bank nurse, I'm sure they'll be able to clarify!

Paul Wicks · Posted: Mon Apr 24, 2006 3:37 pm Post subject:

Yup, just had a chat with someone over here and it's basically so that they get a nice snapshot of a representative cohort of MND patients. The problem if they opened it up to anyone would be that it might introduce bias. For instance, a lot of BUILDers are "long survivors" and if the sample consisted of a higher-than-expected proportion of these long survivors then it wouldn't be a sample representative of what an actual random sample of MND patients would look like. For all we know people with the slow form have an entirely different form of the disease and as they don't make up the majority you wouldn't want to over-recruit them for this type of project.

The specific cutoff date is a pragmatic issue based around when they had the centres up and running and the staff trained etc. If you think you might be borderline or you'd like to know more please err on the side of inclusion and give your local DNA Bank nurse a call; she might be able to explain in more depth or suggest other research projects going on near you.

Cheers

Paul

Jeannie · Highly Active Contributor Joined: 28 Nov 2004 Posts: 2299

Paul, surly it would be worth checking out "long surviving pals LSP" as their MND is obversely a lot slower, not necessarily to do with DNA bank.

Have researchers looked into LSP ?

Je xxx
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Best wishes

Jeannie

If I fail, if I succeed at least Ive lived as I believe.

"As I grow to understand life less and less, I learn to love it more and more."

ALS onset June 2000, dxed July 2001, I am 32 yrs old.
Living and loving everyday regardless of ALS
I'm singing and dancing inside!

Paul Wicks · Posted: Tue Apr 25, 2006 7:35 am Post subject:

Sure is, that's what we do with the King's patient database. You may have seen me quote a paper by Martin Turner several times on here which picked out differences between long and short survivors.

But for this particular project they're looking at something else so they need a representative cohort.

Paul

Erica · Posted: Wed May 17, 2006 5:04 pm Post subject:

Just found out that I won't be able to give sample of my DNA as the nurse at King's College suspects that my first symptoms DID occur before January 2002. Still, saves me a journey down to London, I guess! Smile

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May the sunshine keep breaking through for us on cloudy days

Rachael · Posted: Thu May 18, 2006 8:50 am Post subject: Just Signed up

Just signed up for the Sheffield Gig! Big Heads-up to Hannah who took my details; a really cheery woman, doing a grand job.
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You've got to laugh - apparently it's a symptom!

mick&gill · Posted: Fri May 19, 2006 12:51 pm Post subject: DNA

Both Gill and I, my Mum and sister all gave DNA samples - no problem!

Mick
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Time well spent is the time of your life!

Kim Evans · Regular Contributor Joined: 05 Jan 2006 Posts: 327

I was told I would be contacted by the Birmingham hospital, but have heard nothing. Obviously they are not keen on welsh blood - too strong for them - must be something to do with all those leeks and daffodils in the blood Laughing

Paul Wicks · Posted: Fri May 19, 2006 3:41 pm Post subject:

If at first you don't succeed, put them on auto-redial.

Erica · Posted: Sun May 21, 2006 5:46 pm Post subject:

Just had a word with my student nurse daughter about the fact that I can't give a DNA sample and she and I both think that a sample should be taken and just kept out of the Jan 2002 onwards symptoms group. Surely having MND is rare enough, you'd think they'd encourage anyone with the disease to donate some blood in case something unusual showed up which would give a clue to cause or cure...............oh well, so be it!.......... Sad

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May the sunshine keep breaking through for us on cloudy days

Paul Wicks · Posted: Sun May 21, 2006 7:36 pm Post subject:

Hi Erica,

We do collect such samples "locally" at King's, but only for Familial cases. For sporadic cases a standalone data point isn't that useful; that's why the DNA bank is trying to get a standardised cohort.

Paul