Module 1: NUCDF Partner Network Training

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Name* This field is required.Please enter your name below.
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Email* This field is required.We will send you a confirmation email after you complete this training module.
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Welcome to the NUCDF Partner Network training modules! The goal of the Partner Network project is to prepare the UCD community to actively and confidently engage in patient-centered comparative effectiveness research (PC-CER) and develop a new research roadmap, together. We have already established a multi-stakeholder Advisory Board and recruited key stakeholders across the UCD community.

Now we move to step three: Develop and Deliver Training in Patient-Centered CER.

This phase features virtual training tailored specifically to our community. These sessions will build a shared foundation of knowledge, common language, and practical skills, enabling all stakeholders (patients, caregivers, UCD experts, metabolic dietitians, front-line care providers, and industry partners) to collaborate effectively and confidently as we shape the UCD research roadmap.

You are about to view a training video that includes a patient story. This is Module 1 of 3 in the training series. Each module will take approximately 20 minutes to complete. Downloading the Listening Guide for each module is optional, but it may help orient you to the key concepts covered.

To receive credit for completion, please respond to the questions at the end of each module and click "Submit" on the final screens.
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Click on the down arrow (top right) to download this optional listening guide.Optional
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Click on the "play" button (triangle at left of video bar) to watch this introductory video. Choose "next" when video ends.
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Click "play" to watch this training video and then click "next."
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Fore more on liver transplant v. medical management...

More on the liver transplant v. medical management study that Dr. Nicholas Ah Mew described can be found here:
https://76cc07341.flowpaper.com/MakingtheChoiceMedManagementvsLiverTransplantTheFamilyExpepdf/#page=1.

NUCDF's website also offers extensive resources on navigating the liver transplant decision, here: https://nucdf.org/about-ucd/treatmentmanagement/managing-the-liver-transplant-decision/

You're almost done!

Please respond to the questions on the next two screens and click "submit" to receive credit for completing this module.
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Please suggest a patient-centered comparative effectiveness research question that would impact UCD families:* This field is required.
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What are some areas where you wish you had more information to guide UCD care decisions?* This field is required.
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Fore more on liver transplant v. medical management...