UPMC Children's Hospital PSC study

[Guest guest]

Sorry I don't have more information. I wanted to post a link here,

but couldn't find it anywhere on the news site. I live in the

Pittsburgh, PA area, and there was a short blurb on our local ABC news

today at 5pm regarding PSC in children. Supposedly, UPMC Children's

is doing a study (DNA?) in children with PSC. Wish I had more to

tell. Maybe someone with better internet searching ability can find

what I was unable to find!

Peace,

Suzanna

Crohns 1994, PSC 2007

[Guest guest]

Hi Suzanna;

I suspect that this is part of STOPSC, a multi-center research effort initiated, funded, and organized by The Musette and Jr. Foundation (and also sponsored in part by PSC Partners Seeking a Cure!):

https://web.emmes.com/study/psc/index.html

The Children's Hospital at Pittsburgh is one of the Pediatric Centers involved in this study:

https://web.emmes.com/study/psc/contact/STOPSC%20Participant%20Contact.pdf

Glad to hear that they are publicizing this!

Dave

(father of (22); PSC 07/03; UC 08/03)

> there was a short blurb on our local ABC news today at 5pm regarding PSC in children. Supposedly, UPMC Children's is doing a study (DNA?) in children with PSC. Wish I had more to tell. Maybe someone with better internet searching ability can find what I was unable to find!

[Guest guest]

Thanks for doing the legwork!! Very interesting!

I'm surprised that my doc didn't mention this to me. Of course, I

only visited him once and my follow-up is next month. But I'm happy

to see that he is one of the contacts on the list! Maybe I can get in

on the study. I realize that it probably won't help me per se, but

maybe will help future PSCers.

[Guest guest]

Thanks

Dave.

I am thrilled to see Dr. Chopra and UPMC

was added to the list of adult centers for the STOPSC registry. I hope

that with some publicity that those that are eligible and see their center on

the list will contact the appropriate person and become part of the registry.

The only way research can be done is with patient participation!!!

Joanne (mom of Todd, 21, PSC 01, Crohns

02, TX Twice 03, rPSC 05, Diabetes 06, living life to the fullest 08)

https://web.emmes.com/study/psc/index.html

The Children's Hospital at Pittsburgh is

one of the Pediatric Centers involved in this study:

https://web.emmes.com/study/psc/contact/STOPSC%20Participant%20Contact.pdf

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[Guest guest]

Hi Joanne;

This article provides a bit of publicity about UPMC involvement in STOPSC:

"Childrens Hospital of Pittsburgh of UPMC has been selected to join an effort among select centers in the United States and Canada to collect and study information necessary to understand the possible causes and treatment of a destructive liver disease called primary sclerosing cholangitis (PSC).

The Studies of Primary Sclerosing Cholangitis, or stopsc, is a multi-center research effort initiated, funded and organized by The Musette and Jr. Foundation. PSC is a destructive liver disease of unknown origin that occurs in both males and females and in children and adults. About one person in every 100,000 will get the disease, and currently there is no proven medical treatment for PSC.

Researchers across the country will establish a database and specimen storehouse in an effort to make the information available to other qualified researchers so future studies can be conducted. The major goal of this study is to help develop better ways to detect the disease, find out how effective current treatments are, and conduct more research studies in the future.

This effort is so important for many reasons most important is to better understand the disease and how to treat it. By combining all of our information and research, together, we can tackle this devastating disease head on, said L. Shneider, MD, director of the Pediatric Hepatology Program at Childrens Hospital, who is a member of the American Association for the Study of Liver Diseases. At Childrens Hospital of Pittsburgh of UPMC, we are dedicated to helping children with liver disease by exploring all treatment options maximizing liver function, minimizing complications and maintaining growth and development all to improve the quality of life for each child and family.".....Please see the following link for the full story:

http://www.bio-medicine.org/medicine-news-1/Childrens-Hospital-1-of-10-pediatric-hospitals-in-US-selected-to-study-liver-disease-in-kids-12736-1/

Best regards,

Dave R.

> I hope that with some publicity that those that are eligible and see their center on the list will contact the appropriate person and become part of the registry. The only way research can be done is with patient participation!!!