COVID -19 Post Liver Transplantation Data Collection Registry for Pediatric Patients (0-21 years)

Information Sheet and Informed Consent

Dear Colleagues,

In the midst of the COVID-19 pandemic and the minute by minute evolving situation in our communities and institutions, NASPGHAN and SPLIT-TTS have united to create a secure and de-identified online pediatric registry (ages 0-21). Our intention is to collect and disseminate the experience of our community to better understand the clinical presentation, natural history and long-term outcomes in our hepatology and liver and intestinal transplant population. We are requesting all clinicians who are taking care of pediatric patients (0-21 years) who are pre- or post-liver or intestinal transplantation or who have chronic liver disease worldwide to report ALL cases of COVID-19.

We will provide a weekly report of the collected data through the NASPGHAN GI listserv, the SPLIT COVID listserv and the NASPGHAN website (https://naspghan.org/professional-resources/covid-19/). To sign up for the NASPGHAN GI listserv please send an e-mail to PEDGI-request@list.uvm.edu. To sign up for the SPLIT listserv, if you are a SPLIT member follow this link https://tts.org/split and scroll down to subscribe. If you are part of another TTS section, please log in and subscribe through your respective section website. Otherwise, please follow this link to subscribe https://tts.org/component/rsform/form/312-split-listserv?Itemid=539.

We encourage you to complete this form even if the patient is in the middle of their COVID course. This allows for timely dissemination back to our community with a weekly report of COVID cases. Please note that to back edit already completed forms in the survey; you will need to retain the unique ‘return code’ generated after each form submission. We recommend taking screenshots of these codes as they are generated. From the survey queue please do not click on ‘edit response’ for previously completed forms without having this code available. If you encounter any errors or need help retrieving a code or survey link for a registry form, please e-mail: Angela Hui at Angela.Hui@kingstonhsc.ca

If you partially complete a registry form and would like to return to it later, please email yourself the survey queue (click ‘get link to my survey queue’). After the final registry submission, please also utilize this link to update your form after your patient completes their COVID course.

This study has been granted REB/IRB clearance according to the recommended principles of Queen's University and Columbia University. Institutional review board requirements vary, so we encourage you to consult with yours regarding the need for formal review and approval.

Thank you to everyone in our community that is coming together at this time and for your efforts to serve our hepatology and transplant patients and support each other.

Sincerely,

Mohit Kehar, Pediatric Gastroenterologist and Hepatologist, Queens University

Mercedes Martinez, Chair of the NASPGHAN Hepatology Committee and Medical Director of Intestinal Transplantation, Columbia University

Noelle Ebel, Transplant Hepatologist, Stanford University

Steven Lobritto, Chair of the SPLIT Quality Improvement and Clinical Care Committee, Medical Director of Pediatric Liver Transplantation, Columbia University

Vicky Ng, SPLIT President and Medical Director of Pediatric Liver Transplantation, University of Toronto

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