Xperiome™ Labs

Learn how we turn patient experience into insights through our knowledge bank for the lived experience of rare disease.


Learn about the research studies we conduct with commercial and academic partners, and the clinical trials we support for pharmaceutical sponsors.

Idiopathic pulmonary fibrosis (IPF) clinical research study (INTEGRIS-IPF)
This placebo-controlled Phase 2a study is testing an investigational medicine on adults with idiopathic pulmonary fibrosis.

What do you think about your cystic fibrosis treatment(s)?
This study aims to learn what people with cystic fibrosis actually think about taking the CFTR modulator therapies Kalydeco, Orkambi, Symdeko/Symkevi, and Trikafta/Kaftrio. This is not like other studies that may only focus on following doctors’ orders.

Generalized myasthenia gravis (gMG) ADAPTSC clinical research study
ADAPTSC is a clinical research study testing whether there is a difference in effect on the body between 2 administration routes of an investigational study drug in adults with generalized myasthenia gravis.

Study into living with generalized myasthenia gravis: Part 1
Take part in a study about the everyday experiences of people who are living with generalized myasthenia gravis (gMG)! (Adult caregivers may answer on behalf of people with gMG.)

Case studies

Discover how we’re making our mark in research and accelerating the development and reach of new treatments.