Re: PSC Survey Research Project

[Guest guest]

I checked your survey page and I noted no reference to IRB approval

from your institution. Has this study been reviewed by an IRB? Since

you give the name of your institution, it gives the appearance that

the study is under their auspices. Please clarify if this is the

case or if the survey is just something you are doing of your own

accord.

pb

> Good day.

>

> My name is Jim Higgins and I am a statistics and research

methodology professor at American River College in Sacramento

California. I am also a patient that has been diagnosed with PSC.

I have been interested for some time in conducting a small study to

see if there are any relationships between blood test levels and PSC

symptoms. Additionally, I am interested in the frequency and

severity of symptoms in PSC patients such as aches and pains, mood

changes, fatigue, etc. I have created a web survey that you can

complete anonoumously that asks you for your most current blood test

results as well as about your current symptoms. If you share an

interest in these same questions, I would appreciate it if you would

complete the survey. In about a month or so, I will post the

results of my analysis. If you send me an email requesting it, I

will email you the results of the survey directly.

>

> The web address is www.jimhiggins.net/psc

>

> Thank you for any time you are able to devote to this project.

>

> Jim

>

> Jim Higgins, Ed.D.

> Psychology Professor/Research Coordinator

> American River College

> 4700 College Oak Drive

> Sacramento, CA. 95841

> Email: Higginj@a...

> Research Office Phone: Psychology

Department Phone:

[Guest guest]

This is not being done as part of the institution at all. It is being done only

as part of my own personal desire to know more about my illness and in the hopes

others might share the same questions.

Jim

Re: PSC Survey Research Project

I checked your survey page and I noted no reference to IRB approval

from your institution. Has this study been reviewed by an IRB? Since

you give the name of your institution, it gives the appearance that

the study is under their auspices. Please clarify if this is the

case or if the survey is just something you are doing of your own

accord.

pb

> Good day.

>

> My name is Jim Higgins and I am a statistics and research

methodology professor at American River College in Sacramento

California. I am also a patient that has been diagnosed with PSC.

I have been interested for some time in conducting a small study to

see if there are any relationships between blood test levels and PSC

symptoms. Additionally, I am interested in the frequency and

severity of symptoms in PSC patients such as aches and pains, mood

changes, fatigue, etc. I have created a web survey that you can

complete anonoumously that asks you for your most current blood test

results as well as about your current symptoms. If you share an

interest in these same questions, I would appreciate it if you would

complete the survey. In about a month or so, I will post the

results of my analysis. If you send me an email requesting it, I

will email you the results of the survey directly.

>

> The web address is www.jimhiggins.net/psc

>

> Thank you for any time you are able to devote to this project.

>

> Jim

>

> Jim Higgins, Ed.D.

> Psychology Professor/Research Coordinator

> American River College

> 4700 College Oak Drive

> Sacramento, CA. 95841

> Email: Higginj@a...

> Research Office Phone: Psychology

Department Phone:

[Guest guest]

Thanks for the clarification! You might want to check out

the " Polls " section for this group (go to Yahoo Groups and click

on " Polls " in the left-hand column). The group has done numerous

polls/surveys of members and the results are readily available.

Those data will satisfy some of your curiosity. Many share your same

questions.

We have quite a few gurus on this group and if you have any specific

questions, we'd be happy to share. Subjectively, many report little

relationship between some of the symptoms and lab values,

particularly early in the course of the disease. My labs have

fluctuated quite a bit and now are completely normal despite

significant cirrhosis. Go figure.

Philip

> This is not being done as part of the institution at all. It is

being done only as part of my own personal desire to know more about

my illness and in the hopes others might share the same questions.

>

> Jim

[Guest guest]

Hi Jim;

I took a quick look at your survey, but did not complete it. I should

emphasize that I am not a PSC patient; only a parent of a PSCer. Is

this survey for patients only?

I noticed that the survey did not ask any questions about whether or

not the patient is taking the medication ursodeoxycholic acid

(ursodiol; UDCA, Actigall; URSO). Since this medication can have a

marked effect on serum liver enzyme levels (especially ALT and AST),

and may also [in some patients] reduce alkaline phosphatase and

bilirubin, this would seem to an important variable that will not be

taken into account in your survey.

Best regards,

Dave

[Guest guest]

Hi!

In filling out your questionaire I encountered a problem... my

transplant center doesn't routinely check direct bilirubin, so I don't

have any recent values for it. Should I just input zero? Just wanted

to make sure I don't throw off your analysis!

athan