The PFIC IMPACT web app was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455).
It was collaboratively designed by PFIC patients and clinicians to:
During several focus groups, we have started to compile clinical information about the different treatments as well as patients’ experiences with them.
This app is a dynamic work in progress. The info you can see right now is just a starting point. We will continue to update it when patients or their family members enter their experiences with treatments through the app. After you’ve had a chance to explore, please consider contributing your treatment experiences to help make this an even more well-rounded source of information for our community!
This is a community-built information tool based on patient self-reported experiences. It is NOT representative of a systematic scientific review of available treatments. Research is always ongoing, and more info will be added as more people contribute their self-reported patient experiences.
Please note that patient experiences with PFIC treatments are unique. Treatment effects can depend on many factors, for instance which other surgeries a patient has had in the past, or which other medications a patient is currently taking. Even if multiple patients experience a certain benefit or side effect, this does not mean you will!
PFIC Network is not prescribing or advising any treatment. Please talk to your doctor to make any treatment decisions for you or your child. This app is a resource for you to learn a bit more before you talk to your doctor, or to go through this app together with your doctor.
The statements presented in this web application are solely the responsibility of PFIC Network, and their contributing clinicians and families, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.
To decrease pruritis/itch. To decrease cholestasis (cholestasis is the slowing or stalling of bile flow through your biliary system). To improve bile flow or modify the bile acid pool.
Ursodiol can also prevent stone formation, a potential complication of PFIC 2 (BSEP) and PFIC 3 (MDR3) disease.
Ursodiol is synthetic (artificial) bile acid consisting primarily of deoxycholic acid. It increases bile secretion (discharge) and reduces absorption of hydrophilic (= water soluble) bile acids by the ileum. The ileum is a part of the small intestine.
PFIC patients & the community have
reported the following experiences:
Of the six main areas mainly affected by PFIC, patients & the community have identified the areas impacted by this medication.
If you’d like to learn more you can
do so by visiting our Resource page.
The PFIC IMPACT web app was funded through a Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington Engagement Award (EASO-30455).
It was collaboratively designed by PFIC patients and clinicians to:
During several focus groups, we have started to compile clinical information about the different treatments as well as patients’ experiences with them.
This app is a dynamic work in progress. The info you can see right now is just a starting point. We will continue to update it when patients or their family members enter their experiences with treatments through the app. After you’ve had a chance to explore, please consider contributing your treatment experiences to help make this an even more well-rounded source of information for our community!
This is a community-built information tool based on patient self-reported experiences. It is NOT representative of a systematic scientific review of available treatments. Research is always ongoing, and more info will be added as more people contribute their self-reported patient experiences.
Please note that patient experiences with PFIC treatments are unique. Treatment effects can depend on many factors, for instance which other surgeries a patient has had in the past, or which other medications a patient is currently taking. Even if multiple patients experience a certain benefit or side effect, this does not mean you will!
PFIC Network is not prescribing or advising any treatment. Please talk to your doctor to make any treatment decisions for you or your child. This app is a resource for you to learn a bit more before you talk to your doctor, or to go through this app together with your doctor.
The statements presented in this web application are solely the responsibility of PFIC Network, and their contributing clinicians and families, and do not necessarily represent the views of the Patient-Centered Outcomes Research Institute® (PCORI®), its Board of Governors or Methodology Committee.