RE: Mayo Clinic Genetic Study needs more participants

[Guest guest]

Do you need to be near Rochester, MN to participate? I'm in L.A., Calif.Marie

To: From: cathyerick@...Date: Tue, 30 Sep 2008 20:30:08 +0000Subject: Mayo Clinic Genetic Study needs more participants

Hi All,

Mostly I am a board reader, but have been a member for several years.

I want to mention The Mayo Clinic Genetic Study again. Long term

members are aware of this study but some new to our group may

not be.

I spoke with Schlicht this morning from the Mayo Clinic in

Rochester, MN. I found out they still need people to participate.

They are looking for those with PSC and any willing family members

(parents and siblings.) The study is simple you fill out a survey then

give a small sample of blood. Mayo Clinic picks up all costs.

Anyone willing to participate please contact

Schlicht

Study Coordinator at

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[Guest guest]

I just convinced my parents today to signup. My dad is not big on

getting blood drawn, but he'll do it for this.

Thanks for posting this - the more research we do the better off we

are!

Rick

>

> Hi All,

> Mostly I am a board reader, but have been a member for several

years.

> I want to mention The Mayo Clinic Genetic Study again. Long term

> members are aware of this study but some new to our group may

> not be.

> I spoke with Schlicht this morning from the Mayo Clinic in

> Rochester, MN. I found out they still need people to participate.

> They are looking for those with PSC and any willing family members

> (parents and siblings.) The study is simple you fill out a survey

then

> give a small sample of blood. Mayo Clinic picks up all costs.

> Anyone willing to participate please contact

> Schlicht

> Study Coordinator at

>

[Guest guest]

You do not need to live close to the Mayo Clinic to participate in the

PSC Genetic Study. Mayo first sends you a health survey to complete

and you mail it back to them.

After they review the survey you are sent a Clinical Trial box, which

contains instructions and blood viles. You take the box to your local

hospital and have your blood drawn (which is a very small amount.)

Mayo pays for everything. Once your blood is drawn the hospital takes

over and ships the box back to Mayo. The box comes with a shipping

label for FEDEX fully addressed so it is simple. The study is quick

and easy and hopefully will help unlock the mysteries of PSC.

Cathy

[Guest guest]

Are there privacy safeguards in place? I would be concerned about

members of my family being denied insurance. While the information is

of obvious scientific benefit to us (as well as others), I've been

around long enough to know that there are times when information like

this falls into the wrong hands.

Penny

>

> Hi All,

> Mostly I am a board reader, but have been a member for several years.

> I want to mention The Mayo Clinic Genetic Study again. Long term

> members are aware of this study but some new to our group may

> not be.

[Guest guest]

Are there privacy safeguards in place? I would be concerned about

members of my family being denied insurance. While the information is

of obvious scientific benefit to us (as well as others), I've been

around long enough to know that there are times when information like

this falls into the wrong hands.

Penny

>

> Hi All,

> Mostly I am a board reader, but have been a member for several years.

> I want to mention The Mayo Clinic Genetic Study again. Long term

> members are aware of this study but some new to our group may

> not be.

[Guest guest]

I called and left a message, so hopefully I can participate.Marie

To: From: cathyerick@...Date: Tue, 30 Sep 2008 23:54:16 +0000Subject: Re: Mayo Clinic Genetic Study needs more participants

You do not need to live close to the Mayo Clinic to participate in the

PSC Genetic Study. Mayo first sends you a health survey to complete

and you mail it back to them.

After they review the survey you are sent a Clinical Trial box, which

contains instructions and blood viles. You take the box to your local

hospital and have your blood drawn (which is a very small amount.)

Mayo pays for everything. Once your blood is drawn the hospital takes

over and ships the box back to Mayo. The box comes with a shipping

label for FEDEX fully addressed so it is simple. The study is quick

and easy and hopefully will help unlock the mysteries of PSC.

Cathy

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[Guest guest]

I called and left a message, so hopefully I can participate.Marie

To: From: cathyerick@...Date: Tue, 30 Sep 2008 23:54:16 +0000Subject: Re: Mayo Clinic Genetic Study needs more participants

You do not need to live close to the Mayo Clinic to participate in the

PSC Genetic Study. Mayo first sends you a health survey to complete

and you mail it back to them.

After they review the survey you are sent a Clinical Trial box, which

contains instructions and blood viles. You take the box to your local

hospital and have your blood drawn (which is a very small amount.)

Mayo pays for everything. Once your blood is drawn the hospital takes

over and ships the box back to Mayo. The box comes with a shipping

label for FEDEX fully addressed so it is simple. The study is quick

and easy and hopefully will help unlock the mysteries of PSC.

Cathy

See how Windows Mobile brings your life together—at home, work, or on the go. See Now

[Guest guest]

Concerning privacy issues: Good Question!

The Mayo Clinic explains it thoroughly in their paperwork. In a

nutshell basically your blood work is assigned a random number so it is

always kept anonymous. My husband and I both felt comfortable with the

safeguards Mayo has in place. You can also call the study coordinator

as he is helpful and knowledgeable and can explain it in better detail

then myself. Cathy

k Schlicht

Study Coordinator at

[Guest guest]

Concerning privacy issues: Good Question!

The Mayo Clinic explains it thoroughly in their paperwork. In a

nutshell basically your blood work is assigned a random number so it is

always kept anonymous. My husband and I both felt comfortable with the

safeguards Mayo has in place. You can also call the study coordinator

as he is helpful and knowledgeable and can explain it in better detail

then myself. Cathy

k Schlicht

Study Coordinator at

[Guest guest]

Concerning privacy issues: Good Question!

The Mayo Clinic explains it thoroughly in their paperwork. In a

nutshell basically your blood work is assigned a random number so it is

always kept anonymous. My husband and I both felt comfortable with the

safeguards Mayo has in place. You can also call the study coordinator

as he is helpful and knowledgeable and can explain it in better detail

then myself. Cathy

k Schlicht

Study Coordinator at

[Guest guest]

Cathy,

Is this only for North American PSC

patients? Can people from the rest of the world participate?

Regards,

Chaim Boermeester, Israel

From: [mailto: ] On Behalf Of heathersbestmom

Sent: Wednesday, October 01, 2008

02:28

To:

Subject: Re: Mayo

Clinic Genetic Study needs more participants

Concerning privacy issues: Good Question!

The Mayo Clinic explains it thoroughly in their paperwork. In a

nutshell basically your blood work is assigned a random number so it is

always kept anonymous. My husband and I both felt comfortable with the

safeguards Mayo has in place. You can also call the study coordinator

as he is helpful and knowledgeable and can explain it in better detail

then myself. Cathy

k Schlicht

Study Coordinator at

[Guest guest]

Chaim,

I called Schlict the study coordinator and he said this study is

only open to those living in the States. He mentioned he has recieved

some calls from our group willing to participate, YEA! He still needs

more volunteers so I encourage anyone who is able to help in this

worthy cause. He also gave me his e-amil as another way to contact him.

Schlicht

study coordinator

Schlicht.@...

[Guest guest]

Let my try again. The e-mail for Schlicht study coordinator is

Schlichtz.@...

[Guest guest]

Sorry for the confusion, for some reason Schlict's e-mail is not

showing up the way I type it. You need to add mayo.edu after the @

Cathy

[Guest guest]

Thanks for posting the email address. I'm phone-phobic (well, not

really, but being shy I do prefer email). I emailed him and hopefully

can contribute to this research.

Ruth

>

> Sorry for the confusion, for some reason Schlict's e-mail is not

> showing up the way I type it. You need to add mayo.edu after the @

> Cathy

>