RP Quality of Life (RP-QoL) Study Enters Final Validation Phase

We are pleased to share an important update on the Relapsing Polychondritis Quality of Life (RP-QoL) Study, developed within the framework of the European Reference Network (ERN) ReCONNET.

Recently, Professor Laurent Arnaud, one of the leading international researchers in Relapsing Polychondritis, updated the community on the study’s progress. Working alongside the RP-QoL Study Lead Team, and with the participation of hundreds of people living with RP worldwide, the team has developed the first dedicated tool designed specifically to measure quality of life in Relapsing Polychondritis.

The study has now reached its final validation (“calibration”) phase, and participation from people with a confirmed diagnosis of RP is crucial.

Why Your Participation Matters

This Quality of Life tool will help ensure the lived reality of RP is properly recognised in:

• Future clinical and academic research

• Evaluation of current and emerging treatments

• International healthcare guidelines

• Patient advocacy and support initiatives

By completing this survey, you are directly contributing to how RP is understood, measured and supported globally.

Important Information Before You Begin

• The survey takes around 30 minutes

• It is completely anonymous - no personal data or IP addresses are collected

• You must complete the survey all the way to the final page for your responses to be included

• Best completed on a computer, not a phone

• If the page won’t advance, a mandatory question may have been missed

• Once the study is complete, overall results will be shared with the community

Your time and effort are incredibly valuable to this important international project.

Take Part – Choose Your Language

• English: https://lupusresearch.limequery.org/827315?lang=en

• German: https://lupusresearch.limequery.org/827315?lang=de

• Español: https://lupusresearch.limequery.org/827315?lang=es

• Français: https://lupusresearch.limequery.org/827315?lang=fr