Re: Biobank Collecting Blood Samples for Neuromuscular Disease Resear...

[Guest guest]

My two sons want to donate to Biobank. I wonder what the cost is for

collecting the blood from a local clinic?

In a message dated 12/27/2010 10:48:08 A.M. Pacific Standard Time,

-owner writes:

Biobank Collecting Blood Samples for Neuromuscular Disease Research

People with certain genetic neuromuscular diseases are encouraged to

donate blood samples for research; privacy and anonymity assured

_http://quest.mda.org/news/biobank-collecting-blood-samples-neuromuscular-di

sease-research_

(http://quest.mda.org/news/biobank-collecting-blood-samples-neuromuscular-diseas\

e-research)

The National Institute of General Medical Sciences (NIGMS) Human Genetic

Cell Repository at the Coriell Institute for Medical Research in Camden,

N.J., is collecting blood samples from people with genetic diseases for use in

research.

The cell lines, DNA and other materials derived from the samples are used

by scientists worldwide to study the diagnosis, treatment and prevention of

rare genetic disorders. Several measures are taken to ensure the privacy

and anonymity of donors.

The NIGMS biobank is seeking blood samples of genetic neuromuscular

diseases including muscular dystrophy, motor neuron diseases, metabolic

diseases

of muscle, peripheral nerve diseases, diseases of the neuromuscular

junction, and other myopathies. Interested parties may contact NIGMS to see if

their type is needed for the bank.

Although the sample collection kit is free, the bank does not cover the

cost of obtaining the sample.

People with genetic neuromuscular diseases who want to " do something for

science " now have a way to do so, although they're unlikely to ever know the

results of their good deed.

Scientists at the National Institute of General Medical Sciences (NIGMS)

Human Genetic Cell Repository at the Coriell Institute for Medical Research

in Camden, N.J., are seeking blood samples from people with certain

inherited neuromuscular diseases for use in research.

In particular, the biobank needs blood samples from people with muscular

dystrophy, motor neuron diseases, metabolic diseases of muscle, peripheral

nerve diseases, diseases of the neuromuscular junction and other myopathies.

Most of the diseases covered by MDA are included in these categories.

" We try to have a broad representation in the repository of as many

different genetic diseases as possible, and within diseases we try to represent

as many genotypes/phenotypes as possible, " says Tara Schmidlen, a genetic

counselor who coordinates the admittance of samples into the NIGMS biobank.

An exact genetic diagnosis is not required for a sample to be added to the

bank, although the more clinical information that can be provided, the

more useful the sample will be to researchers, Schmidlen says.

The biobank does not perform individual genetic testing and once a sample

is submitted, it cannot be removed.

Numerous measures are taken to protect the privacy and anonymity of the

donor, but these measures also prevent any personal information from being

derived from the sample. The bank does not provide results of any kind to

donors.

Rather, the anonymous samples are used by researchers around the world who

use cell lines and DNA to discover new disease-causing genes; study known

genes and their expression; and devise new genetic tests.

Samples from the NIGMS biobank, the world's largest, have been used in

more than 5,000 scientific publications and by scientists in more than 50

countries, the organization says.

Participation requires a blood or tissue sample, as well as a completed

consent form, a submission form, and a clinical information summary form.

The Coriell Institute for Medical Research mails participants a collection

kit and pays for the cost of shipping the sample, but not the costs

associated with collecting it.

For more information

Schmidlen advises interested individuals to e-mail her at

_tschmidl@..._ (mailto:tschmidl@...) or call (856) 757-4822,

to see if the

Institute needs blood samples of their particular disease or subtype.

" For some of the more common conditions, we may not be able to accept more

samples, but this depends on what we already have in the depository and,

occasionally, on what needs to be replenished — some cell lines are used

more regularly than others, " Schmidlen says.

More information may also be found at www.coriell.org and FAQs about the

NIGMS Repository.

Average:

[Guest guest]

When I read this, I clicked on the link and Tara wrote back to me first thing

this morning. They are really interested in CMT 1A and will be sending me

collection kits. Since I live in NJ, I thought they would just want us to go to

them to have it done, but they seem to prefer sending the kits. When I asked,

she said Quest Diagnostics has told them they would bill in the area of $30 to

draw blood for research. I am having a kit sent and will look into options for

having the blood drawn. They also want any reports or documentation that we have

from previous doctor visits. We had the Athena testing and have had 2 visits so

far at the CMT clinic at Wayne State, so I will make copies and include that.

Anything for research!

Mark

>

> My two sons want to donate to Biobank. I wonder what the cost is for

> collecting the blood from a local clinic?

>

>

>

>

> In a message dated 12/27/2010 10:48:08 A.M. Pacific Standard Time,

> -owner writes:

>

>

>

>

> Biobank Collecting Blood Samples for Neuromuscular Disease Research

>

> People with certain genetic neuromuscular diseases are encouraged to

> donate blood samples for research; privacy and anonymity assured

>

> _http://quest.mda.org/news/biobank-collecting-blood-samples-neuromuscular-di

> sease-research_

>

(http://quest.mda.org/news/biobank-collecting-blood-samples-neuromuscular-diseas\

e-research)

>

> The National Institute of General Medical Sciences (NIGMS) Human Genetic

> Cell Repository at the Coriell Institute for Medical Research in Camden,

> N.J., is collecting blood samples from people with genetic diseases for use

in

> research.

>

> The cell lines, DNA and other materials derived from the samples are used

> by scientists worldwide to study the diagnosis, treatment and prevention of

> rare genetic disorders. Several measures are taken to ensure the privacy

> and anonymity of donors.

>

> The NIGMS biobank is seeking blood samples of genetic neuromuscular

> diseases including muscular dystrophy, motor neuron diseases, metabolic

diseases

> of muscle, peripheral nerve diseases, diseases of the neuromuscular

> junction, and other myopathies. Interested parties may contact NIGMS to see

if

> their type is needed for the bank.

> Although the sample collection kit is free, the bank does not cover the

> cost of obtaining the sample.

>

> People with genetic neuromuscular diseases who want to " do something for

> science " now have a way to do so, although they're unlikely to ever know the

> results of their good deed.

>

> Scientists at the National Institute of General Medical Sciences (NIGMS)

> Human Genetic Cell Repository at the Coriell Institute for Medical Research

> in Camden, N.J., are seeking blood samples from people with certain

> inherited neuromuscular diseases for use in research.

>

> In particular, the biobank needs blood samples from people with muscular

> dystrophy, motor neuron diseases, metabolic diseases of muscle, peripheral

> nerve diseases, diseases of the neuromuscular junction and other myopathies.

> Most of the diseases covered by MDA are included in these categories.

>

> " We try to have a broad representation in the repository of as many

> different genetic diseases as possible, and within diseases we try to

represent

> as many genotypes/phenotypes as possible, " says Tara Schmidlen, a genetic

> counselor who coordinates the admittance of samples into the NIGMS biobank.

>

> An exact genetic diagnosis is not required for a sample to be added to the

> bank, although the more clinical information that can be provided, the

> more useful the sample will be to researchers, Schmidlen says.

> The biobank does not perform individual genetic testing and once a sample

> is submitted, it cannot be removed.

>

> Numerous measures are taken to protect the privacy and anonymity of the

> donor, but these measures also prevent any personal information from being

> derived from the sample. The bank does not provide results of any kind to

> donors.

>

> Rather, the anonymous samples are used by researchers around the world who

> use cell lines and DNA to discover new disease-causing genes; study known

> genes and their expression; and devise new genetic tests.

> Samples from the NIGMS biobank, the world's largest, have been used in

> more than 5,000 scientific publications and by scientists in more than 50

> countries, the organization says.

>

> Participation requires a blood or tissue sample, as well as a completed

> consent form, a submission form, and a clinical information summary form.

>

> The Coriell Institute for Medical Research mails participants a collection

> kit and pays for the cost of shipping the sample, but not the costs

> associated with collecting it.

>

> For more information

> Schmidlen advises interested individuals to e-mail her at

> _tschmidl@..._ (mailto:tschmidl@...) or call (856) 757-4822, to see if the

> Institute needs blood samples of their particular disease or subtype.

>

> " For some of the more common conditions, we may not be able to accept more

> samples, but this depends on what we already have in the depository and,

> occasionally, on what needs to be replenished †" some cell lines are used

> more regularly than others, " Schmidlen says.

> More information may also be found at www.coriell.org and FAQs about the

> NIGMS Repository.

> Average:

>

>

>

>

>

>

>