Re: Introduction + STOPSC question- why 5 year limit?

[Guest guest]

Hi ,

Thank-you.

I did find Msg #95248- there is a lot of interesting info there-

especially about the cost of this database.

The cost does seem high- in this age of inexpensive data storage, data

entry (outsourced to India, like interpretation of our Xrays), and

analysis by graduate students. But perhaps they are all expensive.

I'm still disappointed, but greatful that this database has been

started, and may help folks long term.

Anyone know if any genetic studies have been setup with the

MIT/Harvard Broad Institute yet?

Best Regards,

DJ

PSC '93; 2.5g Urso; 1.6g DHA

>

> Hi DJ;

>

> These are really great questions. I tried to explain the

> exclusion/inclusion criteria in Message #95248 (Memo from Memphis).

> If you can't access the archives, then let me know and I'll re-post

> it. It boils down to how much money it will cost to enter data for

> each patient, and for annual maintainence thereafter for each patient

> in the registry. In Message #95248 I try to go through all of the

> costs, and how many patients they can include with the funda

> available. If there was an unlimited supply of funds, then yes they

> would be able to back many more years.

>

> PSC Partners is contributing to the project, but the vast majority of

> the funds are provided by Musette and .

>

> This would be something to bring up with Dr. Black at the conference

> in May.

>

> Best regards,

>

> Dave

> (father of (22); PSC 07/03; UC 08/03)

>

[Guest guest]

Hi ,

Thanks; that is interesting about UCD.

(I was diagnosed while at grad school out there in sunny CA- was sorry

to leave; had to drop out of my PhD program because the school

insurance wouldnt cover me. My old records probably wont let me

wangle into the study :-S ).

The clinical trials are at:

www.clinicaltrials.gov

I've put this in the links section of the Yahoo group, so folks can

find it easily.

I did sign up for a trial that doesnt appear yet on the clinical

trials website.

The protocol number: 2006P-000478.

Title: Identifiction of modifier genes in Pancreatitis and Primary

Sclerosing Cholangitis.

They are looking at diseases associated with mutations in genes that

cause Cystic Fibrosis (CFTR).

The DNA anaysis will be performed by the Hospital for Sick Children in

Toronto, Canada.

The study wants to recruit 180 participants.

Best,

DJ

PSC '93

Urso 2.5g/day; DHA 1.6g/day

>

> Hello ,

>

> I reviewed your archived email regarding STOPSC and see that people who

> participated in the Mayo and UC patient registries and DNA banks

> might be included in the STOPSC study if STOPSC does not obtain enough

> participants. But, only PSC patients who were seen regularly at UCD or

> Mayo would be eligible.

>

> Do you know if Mayo is still recruiting patients for their registry and

> DNA bank outside of STOPSC?

>

> UC is not currently collecting blood for their registry/DNA bank

> but they will be participating in STOPSC. However, UCD will be

> recruiting PSC patients to participate in other Non-STOPSC research.

> These may include genetic and immune system studies and a possible

> clinical trial.

>

> I was very disappointed when I learned of the STOPSC 5 year rule. My

> doctor explained that it has to do with more than money. It also

has to

> do with the ability to study the progression of the disease from

date of

> diagnosis or close to that date and also has to do with assurance that

> patients in the cohort definitely had PSC.

>

> Although many of us will not be able to participate in STOPSC there are

> other studies and clinical trials out there that we can participate

in.

> I know there is a web-site that lists clinical trials. I don't have

the

> address but maybe someone else can post it. Also, ask your

hepatologist

> if he/she knows of any research on PSC that you can participate in.

> Gastroenterology and Hepatology fellows have to do research and there

> are small studies that may involve PSC.

>

> (Sacramento dx UC and PSC 2001

>