PROM Healthcare Worker ARPKD Survey Invitation

Dear members and friends of IPNA around the world,

we would like to invite you to participate in a short survey aimed at identifying the most relevant outcomes for patients with Autosomal Recessive Polycystic Kidney Disease (ARPKD) from the view of doctors, nurses and other healthcare professionals.

This international initiative, in collaboration with Lisa Guay-Woodford (Children’s hospital Philadelphia, USA), seeks to establish a multi-national and multi-stakeholder perspective on core outcomes for ARPKD clinical trials – including patients, caregivers, and providers.

We are looking for insights from healthcare professionals who have worked with patients and families affected by ARPKD— including physicians of all training levels (also including gastroenterologist) nurses, psychologists, therapists, and beyond. Therefore, please also forward this link to other members of your team.

Your perspective will help shape the development of clinical studies that better address patient needs. The survey takes approximately 8 minutes to complete and can be accessed via this link , by scanning the QR code below or copying the address at the bottom directly into your browser. The initial informed consent form will ask for your clear name, but it will be stored separately and of course your answers will remain anonymous.

If you have questions, feel free to contact Charlotte Gimpel.

Thank you in advance for your time and effort in contributing to this important initiative.

Charlotte Gimpel and Franz Schaefer

University of Heidelberg, Germany

https://redcap.chop.edu/surveys/?s=EK37D4PH8X9FP9WC

PD Dr. med. Charlotte Gimpel  MB BChir MA
Wissenschaftliche Mitarbeiterin | Zentrum für Kinder- und Jugendmedizin | Sektion pädiatrische Nephrolgoie  Universitätsklinikum Heidelberg | Im Neuenheimer Feld 430 | 69120 Heidelberg | Germany E-Mail: Charlotte.Gimpel@med.uni-heidelberg.de http://www.klinikum.uni-heidelberg.de