Today, I was notified that the Cholestatic Liver Disease Research Consortium (CLiC) has begun the longitudinal study of the causes of intrahepatic cholestasis. Last fall, I interviewed the chief investigator, Dr. Ron Sokol, who explained how the study works. See this post to read that article.
As much as I'm excited and will be enrolling my daughters in this study, I'm equally upset that it will require me to add yet another set of tests for both Grace & Meghan. They are easily traumatized by blood tests, and while this research may help them down the road, it means that they must sacrifice some of their DNA. This is the part of their Alpha-1 that I don't like. Making them participate in research gives me some pause, but I know that this study is being conducted to try to figure out why some people with Alpha-1 never develop significant liver disease and others develop it at birth like Grace did. Understanding that may lead to a cure.
In any case, I hope that parents of Alpha-1 children sign their kiddos up for this study. It is a way for us to contribute to a possible cure. I know they need over 250 Alphas to make this study work. Here is the email I received. Please consider enrolling your Alpha-1 child:
This is an update from the Cholestatic Liver Disease Consortium. The following study is currently recruiting participants. This update provides information such as a study summary, eligibility criteria, and a list of participating center locations. If you are interested in participating in this study or you have more questions, please contact the center nearest to you.
Study Name: 6001 - Longitudinal Study of Genetic Causes of Intrahepatic Cholestasis
Study Status: Recruiting
Participating Centers and Contact Information
Children's Memorial Hospital (Chicago) (CLIC) < i>(New)
Principal Investigator: Peter Whitington, MD
Contact Person: Krista Tuzinkiewicz
Cincinnati's Children's Hospital Medical Center (CLIC) (New)
Principal Investigator: James Heubi
Contact Person: Jan Dietz, RN
Mount Sinai Medical Center (CLIC) (New)
New York, New York
Principal Investigator: Frederick Suchy, MD
C ontact Person: Sanobar Parkar, MD
St. Louis University (CLIC) (New)
St. Louis, Missouri
Principal Investigator: Jeffrey Teckman, MD
Associate Professor of Pediatrics and Biochemistry and Molecular Biology
Director, Pediatric Gastroenterology and Hepatology
Saint Louis University School of Medicine
Cardinal Glennon Children's Medical Center
1465 South Grand Blvd.
Saint Louis, MO 63104
research coordinator for CLiC, Vikki Kociela, e-mail: firstname.lastname@example.org
The Children's Hospital (Denver) (CLIC) (New)
Principal Investigator: Ronald Sokol, MD
Contact Person: Elizabeth Esterl, RN,MS
Washington University School of Medicine (CLIC) (New)
St. Louis, Missouri
Contact Person: Rosemary Nagy, MBA