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Scleroderma Registry & DNA Repository


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9 replies to this topic

#1 Clementine

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Posted 18 May 2007 - 02:45 AM

Has anyone been involved with this research project by the University of Texas?
That is the exact name of the study. Let me know if you are familiar with it.
Jennifer

#2 Shelley Ensz

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Posted 18 May 2007 - 03:28 AM

Hi Jennifer,

We have a page about the Scleroderma Family Registry and DNA Repository on our main site, at:
http://www.sclero.or...ada/a-to-z.html

People can join all the registries that they are eligible for, since they are not like clinical trials, where you can do just one at a time. We strongly encourage eligible patients and family members to enroll in the Scleroderma Family Registry and DNA Repository.

The Scleroderma Family Registry contains information including the the patient's name, gender, ethnic background, optional social security number, address, phone number, date of birth, as well as information such as date of diagnosis, type and severity of scleroderma, and results of some laboratory tests and x-rays. All information is kept confidential.

To enroll, contact:

Marilyn Perry
Coordinator of the Scleroderma Family Registry
University of Texas Health Science Center at Houston
6431 Fannin Street
MSB 5.270
Houston, TX 77030

Toll Free: 1-800-736-6864
Local: 713-500-7196
Email: [email protected]
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Clementine

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Posted 18 May 2007 - 04:08 AM

Thank you! Marilyn is who I've been in contact with. I am going to do it!!!
I love helping.
Jennifer

#4 Shelley Ensz

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Posted 20 May 2007 - 11:30 AM

That's terrific, Jennifer!
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#5 adensmore

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Posted 21 May 2007 - 03:39 AM

I did it last year. It's no big deal, just answer a questionaire and give a blood sample.

#6 barefut

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Posted 21 May 2007 - 04:02 PM

So, what is the registry used for? What do they do with the information we provide?

Barefut

#7 Sheryl

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Posted 22 May 2007 - 02:26 PM

The DNA repository family registry wants to establish a registry of scleroderma cases. They want to collect and store DNA (genetic materials in cells) and serum on scleroderma cases and available family members. They want to screen for other autoimmune diseases like lupus. You give a blood sample. They want all your medical records from your doctors office. Or at least the ones with Thyroid, Raynaud's, Scleroderma, and Lupus. The registry will contact you possibly once a year for any updates on your scleroderma. You will fill out several pages of paperwork. One is on Raynaud's. One is on type of Thyroid disease and if you have things such as Polymyalgia or Polymyositis or Dermatomyositis. Type of Scleroderma, Lupus, Osteoarthritis, Sjogrens etc. You will give a blood sample of aproximately 2 tablespoons. Your DNA is suppose to be kept confidential. You will fill out things about parents and siblings, race etc. I hope this answered your question properly. Sheryl
Strength and Warmth,
Sheryl

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#8 kramer57

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Posted 28 May 2007 - 03:54 AM

How do they get the blood sample? Is it done at your regular doctor or hospital? Do you have to pay for the blood sample to be taken?
Thanks,
Karen

#9 relicmom1

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Posted 29 May 2007 - 01:36 AM

Good morning all!! I am in the process of filling out the paperwork to be included in this study. According to the paperwork I received, they also want volunteers that do not have scleroderma or autoimmune dissease to be "normal controls".It also says they will pay for any costs incurred for the drawing of the blood sample. It says I can get the blood drawn by my md or go to a lab in my area. They will send a kit with everything the lab will need to draw the sample. I did not recieve that part yet. Apparently, I have to fill out the quesitonaire first to see if I qualify, then they send that part. I'm going to go ahead and fill out the papaers and do the rest of it if they deem me eligible. I have CREST , so I don't think there will be a problem being incuded.
Peace :)
Barbara aka relicmom1

#10 kramer57

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Posted 29 May 2007 - 02:23 AM

Thanks Barbara, I just lost my health plan so I had to find out who's paying for the blood samples! :) I think I'll check into this too.
Karen