BARE collaborates with other key organizations and individuals within the Biliary Atresia community to help in research efforts.
Ensure Your Child Is Up-To-Date on Vaccines By Transplant!
Research Study for Families with Children Awaiting Transplant
COMIRB #20-0527, University of Colorado and the Agency for Healthcare Research and Quality
Primary Investigator: Amy Feldman, MD MSCS
Less than 20% of children who undergo transplant are up-to-date on vaccines at time of transplant
1 in 6 pediatric transplant recipients is hospitalized in the first 5 years after transplant with a vaccine-preventable infection
Phone apps can be useful tools in helping to remind teams when vaccines are due
The goal of this research is to trial a mobile health tool (a phone app) to help increase immunization rates in the pre-transplant period
What the Study Involves:
If you participate in this study you will be asked to:
Fill out a brief online survey describing your thoughts and beliefs about vaccination in the pre-transplant period
Download the Immunize PediatricTransplant phone app and use it as you find helpful until your child is transplanted
Complete a brief survey after transplant describing your experience with the app
Your child is awaiting heart, liver, or kidney transplant
You don’t have access to an I-phone or Android phone
Duration of the study:
You would participate from enrollment through your child’s transplant
If interested please contact: Dr. Amy Feldman, firstname.lastname@example.org
EMBARK Clinical Trial
The EMBARK research study, initiated by our partners at Mirum Pharma, is a Phase 2b study evaluating LIVMARLI (maralixibat) in pediatric patients with biliary atresia.
What is Maralixibat?
Maralixibat is a medication that targets and temporarily blocks something in your body called the ileal bile acid transporter (IBAT). In doing so, it reduces the amount of bile acids in the liver and blood by interrupting bile acids from going back into the liver and increases the amount of bile acids that are excreted (eliminated) from the body in feces.
BOLD clinical trial
The BOLD research study, initiated by our partners at Albireo Pharma, is the first Phase 3 study to evaluate the safety and efficacy of the medication odevixibat in babies with biliary atresia who have undergone a Kasai procedure.
What is Odevixibat?
Odevixibat is a potent, non-systemic ileal bile acid transport inhibitor (IBATi) designed to treat rare pediatric cholestatic liver diseases such as biliary atresia. Odevixibat is a once-daily oral medication which may be emptied into breastmilk, formula, or certain soft foods.
For more information on this clinical trial, please visit www.boldtrial.com.