US Sjogren's Registry

[iraisin]

http://sicca.ucsf.edu/faq.html

Has anyone done this?

[sass]

I have not even heard of it, but it sound so interesting...hmmm makes you wonder...maybe we should all sign up and blow their minds...haha

[Gayle]

Did I read this correctly, it requires a lip biopsy?

[iraisin]

I what I gathered was that they are doing research to develop better diagnosing standards. If you would like, I can contact them and get the real low-down.

It may be that more of us need to register with them.

[MissyLouWho?]

It said we have to have a "Bilateral parotid enlargement consistent with Sjögren's syndrome" in order to be admitted to the study.  What is that? I've never been told I have anything irregular with any glands.

Gayle, I read the same thing.  You have to have the lip biopsy if you haven't had one in the last 3 years???!  No thank you.

[iraisin]

I just sent them this note:
**************************
I just stumbled upon your site and showed it to my fellow sufferer's on Sjogren's World.

Would you please provide a brief summary of what tests one needs to have to help you identify the new standards under consideration.

I was hoping your study was helping the folks that don't test positive, but have Sjogren's. There are many that are suffering, some from serious lung involvement identified as Sjogren's, but are negative on all the traditional tests. This is a big issue, and may folks are being denied treatment or disregarded and getting very sick due to the criteria.

Thank you for your time,
*********************
I'll let you know what they say...if anything.

[Gayle]

Iraisin, thanks so much! I am looking forward to hearing more about this!

I'm with you MissyLou, I am not having one (lip biopsy)when my own Dr says I don't need it.

Hope they will be more reasonable than that.
Gayle

[iraisin]

This is the auto-reply e-mail I got
********************************
Thank you for your interest in the Sjogren's syndrome Registry.
Please visit our website at http://sicca.ucsf.edu/

We are conducting a study of Sj?gren?s syndrome at the University of California, San Francisco.  The study called SICCA, (Sj?gren?s International Collaborative Clinical Alliance) also includes research sites in Baltimore, China, Japan, Argentina, India, Philadelphia, and Denmark and the United Kingdom. The study goals are to improve the diagnosis and treatment of the disease.  The National Institutes of Health are funding this study.



If you are interested in participating in SICCA:

We would complete a short questionnaire with you over the phone.
If we find that you meet the criteria for the study, we would schedule you to come in for a study visit at UCSF.
We would then mail you two questionnaires to complete and bring with you to your study visit. The questionnaires ask about your health, medical history and brief demographic information.


At the study visit the following will take place:

We will ask you to sign a consent form to participate in the study
A clinician will examine your eyes and mouth
A clinician will palpate your lymph nodes, joints, liver and spleen.
Observations will be made of your skin
A labial salivary gland biopsy will be performed
Blood will be collected (approximately 7 tablespoons)


If the study exams show that you may have Sj?gren?s syndrome, we would ask you to identify two family members who would be willing to answer questions about their medical history and contribute a saliva sample.  If you were found to have Sj?gren?s syndrome, you could contact Dr. Ava Wu at 415-794-5539. 



If you are interested in participating or would like additional information, please call our Clinical Coordinator, Danielle Drury at (415) 476-0535 or email us at Danielle.Drury@ucsf.edu. No one will call you about the study unless you contact us first.



Participation in SICCA is completely voluntary. If you do not wish to participate and do not wish to call about the study, your medical treatment will not be affected.



All information for this study is collected under authority of the U.S. Public Health Service Act (42 USC 285h).  It will be kept confidential in accordance with Federal regulations and will be used for

research purposes.  Names or other identifying information will not appear in any publication resulting from the study; survey results will be published only as statistical summaries. 



Participation in the survey is voluntary, and failure to cooperate will not result in any penalty or loss of benefits.

Danielle Drury

SICCA, Clinic Coordinator
*****************************

So I'll just wait and see.....I'll keep you informed

[Gayle]

wow...

[iraisin]

I know.

So, do you think they are going to contact me personally based on my original query? Or do you think this requires me calling to get more info.

I wouldn't mind doing all that stuff if it will help folks in the future - but I'm in Texas. Are they going to pay for my travel, hotel, and lost time from work due to travel and the subsequent flare to follow?

[Gayle]

Exactly, I thought about that as well, the expenses.. I can't imagine they have many participants with these requirements AND you get the lovely joy of paying for all you mentioned too.. wonder what is next....

Gayle

[iraisin]

well...I guess I'll call this lady and see what she says. I'll let you know...

marching on...

edit: I just sent her an e-mail explaining all of this and asked if we could use a hospital here in Houston as a satellite location in my case.