Rheumatic Diseases Study

[Guest guest]

When I went to the rheumy on Wednesday, I was asked to join a

Rheumatic Diseases Study. Of course I said yes. All I have to do, if I

understand correctly, is to fill out a short questionnaire each time I

go for a visit. For the first time, though, it was 5 pages long. I

told the nurse that she should have given it to me while I was in the

waiting room. (I had been waiting for 45 minutes, longer than usual.)

I had time to fill in the questionnaire while waiting for the rheumy

to come in, though. I signed the consent form and took the papers

explaining the study home with me. It was 18 pages of explanation, and

of course I didn't understand some of it.

I don't know how many of my rheumy's patients will be participating.

The Corrona Consortium of Rheumatology Researchers of North America is

sponsoring the study.

Some of the findings of the study may be used to develop new drugs

that will profit somebody, but the participants will not receive any

compensation.

I think they will do a few blood tests initially at least. They will

use a blood sample for DNA to study. So now my DNA will be in three

studies, RA, Fuchs' Corneal Dystrophy, and diabetes. I must have

interesting DNA, LOL.

I still participate in the National Data Bank for Rheumatic Diseases.

All I have to do for that is fill out a questionnaire twice a year. I

could do it pretty quickly online if it were not for the financial

questions. I wound up putting " Don't know " this year because I just

didn't have time to figure how much I had spent on medical care.

Oh, I almost forgot, I am also participating in a Lung Cancer study.

For that, participants were randomized to get a chest ex-ray or a CT

scan of our lungs. I got the CT scan. The study is supposed to

determine if CT scans can detect lung cancer better than ex-rays.

After the initial visit, all I have to do for that is to fill out a

short questionnaire twice a year. They want to see who gets lung

cancer, I suppose.

Sue, part-time scientist, LOL

[Guest guest]

Good for you for doing that study, but I have to say it does irk me a bit

that the pharmaceutical companies make billions of $$ on us and they can't

even compensate you a little bit for all the time and trouble. Am I the

only one who gets annoyed with that? Sorry, just had to vent.

Hope you all have a good day today!

/NY

[Guest guest]

I guess it depends in part on who is conducting the study. For the

Diabetes Heart study in 2004, my five siblings and I did get lots of

free tests, plus $100 and pay for travel and hotel if we needed it.

The same thing applied to the recent Diabetes Mind study that we

participated in.

For this Rheumatic Diseases study, we do get compensated if they call

us and ask for information over the phone, as I understand it.

Sue

On Oct 16, 2010, at 12:36 PM, AMMACLARKE@... wrote:

> Good for you for doing that study, but I have to say it does irk me

> a bit

> that the pharmaceutical companies make billions of $$ on us and they

> can't

> even compensate you a little bit for all the time and trouble. Am

> I the

> only one who gets annoyed with that? Sorry, just had to vent.

>

> Hope you all have a good day today!

> /NY