Clinical Study?

[soycoffee]

I'm circling back to Susanep's first post, and thinking driving 1 1/2 hours each way to participate multiple times does not make for a win-win situation between researcher and subject.

A plus for you would be if they put you and your husband up for a night or a weekend at the end of the trip. :-)

I think we don't have any information about the developmental picture of Sjögrens. Perhaps the study has been done -- follow a number of people for 20 or 30 years, who might be likely to get Sjögrens based on family history, and gather as much information as the subjects are willing to put up with -- but it seems unlikely to me that such a study has been done.

I'm in the wrong age group, but I would volunteer, I think, for the benefit others, and possibly to myself.

On the other hand, I wouldn't volunteer to travel over a considerable distance.

Being facetious now, couldn't there be a facet of this disease that worked to bring us all together in one place, so we could be studied? In a compound on Hyannis Port? In the Great Smokies in Spring? In Park City, Utah? In Portland in June?

Oh, well, good night, sleep well,
Soycoffee

[susanep]

I have decided to pass this one up, because we couldn't handle that long of a drive that often. We are done in just getting groceries or having to go to Wal-Mart for something.

I have always been one to want to help others, but I just don't think we can handle this.

susanep 

[A66eyroad]

A sound decision I think.

As much as we all want to help our fellow sufferers, in the end, we've each got to do what is best for ourselves and our loved ones.

I guess that's why the flight attendants tell us to place our own oxygen masks on first before helping others.

[soycoffee]

I just got the patient information sheets for the international diagnostic study on Sjögrens, which will maintain a genetic and tissue bank for the future, with NIH support.

One of the features is that people who live more than 50 miles one way (as the crow flies, I think) from the place of the study have a different schedule of payment for the study. Ordinary locals, like me, will get $50 for participation. These who live outside the 50 mile limit will get up to $150 for taking part, as well as one night's hotel stay. The two hotels that belong to the University are not top notch, but are -- how can I say it? -- pretty nice, in a midlevel European sort of way.

The study as it will take place on December 14th starts at 8:15 am, but is basically completely NPO from 5:00 am, with a number of more stringent restrictions, for example not using eye drops from 8:00 pm the night before.

The diagnostic results will be available, they say, about 3 months after the date one participates, but apparently only if one fulfills their criteria for Sjögren's.

Still not a good deal if a husband has to drive a wife here, and they both need to stay over two nights, instead of the one that's paid for. Also, I think this is the very last time there will be an all day gathering of expert diagnosticians and subjects, as the 7 or 8 centers around the world are due to wind up their parts in 2011.

Soycoffee