Re: Spoke to a guy at mayo today...

[Guest guest]

Colleen,

It is Dr. Lazaridis at the Mayo clinic that is conducting the study. When I went

up to Mayo in Dec. I enrolled, giving blood and filling out a very long

questionnaire while providing the names and addresses of my closest relatives.

When Dr. Black of the foundation spoke at our Jax conference he updated

us on the STOPSC registry. He noted that patients diagnosed within the last 5

years would be recorded in the study but they soon hoped to expand the length of

time with disease. After his presentation, I told him I was part of Dr.

Lazaridis' study and was 7 years into the disease. He told me that I would

probably be included as part of STOPSC at some time in the future. I would

encourage anyone willing to participate in this genetic study to contact Dr.

Lazaridis. He is part of the Gastroenterology team at Mayo Rochester. Everything

can be done at your local labs and sent to Mayo.

Tarheel Tim

[Guest guest]

Tim,

This is interesting. My son sees a Pediatric Hep at Mt Sinai in NYC.

When we were there in Jan they asked us to sign up for the STOPSC. We

did but were told that we had to do the bloodwork there at Mt. Sinai.

Since we live 3 hrs away, I would much rather do the bloodwork in my

hometown where he is familiar with the people in the lab (he is 7 yr

old). Maybe I will call and ask them about it, but I dont think you

have to register at Mayo. Dont you register through the sites that

are part of the STOPSC registry?

> When Dr. Black of the foundation spoke at our Jax conference

he updated us on the STOPSC registry. He noted that patients diagnosed

within the last 5 years would be recorded in the study but they soon

hoped to expand the length of time with disease. After his

presentation, I told him I was part of Dr. Lazaridis' study and was 7

years into the disease. He told me that I would probably be included

as part of STOPSC at some time in the future. I would encourage anyone

willing to participate in this genetic study to contact Dr. Lazaridis.

He is part of the Gastroenterology team at Mayo Rochester. Everything

can be done at your local labs and sent to Mayo.

>

> Tarheel Tim

>

[Guest guest]

Sara,

The STOPSC registry is going on in approximately 20 medical centers in the US

and Canada. Mayo is just one of them. I think Dr. Lazaridis' study is

independent of STOPSC except that many of his volunteers qualify to be included

in the STOPSC registration. Like Colleen, I spoke to his staff assistant who was

ready to send me a blood draw kit in the mail before he found out I was coming

to Rochester. STOPSC may require their blood samples to be drawn at the center

site. I don't know. I would hope that they would take your son's age into

consideration and make it as easy as possible on him, including the comfort of

his familiar lab setting.

Wishing you well,

Tarheel Tim

[Guest guest]

Sara,

The STOPSC registry is going on in approximately 20 medical centers in the US

and Canada. Mayo is just one of them. I think Dr. Lazaridis' study is

independent of STOPSC except that many of his volunteers qualify to be included

in the STOPSC registration. Like Colleen, I spoke to his staff assistant who was

ready to send me a blood draw kit in the mail before he found out I was coming

to Rochester. STOPSC may require their blood samples to be drawn at the center

site. I don't know. I would hope that they would take your son's age into

consideration and make it as easy as possible on him, including the comfort of

his familiar lab setting.

Wishing you well,

Tarheel Tim