Xperiome™ Labs

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

Research

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


Active
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.

Completed
What do you think about your myasthenia gravis treatment(s)?
This study aims to learn what people with myasthenia gravis actually think about taking the medication(s) eculizumab (Soliris), neostigmine (Bloxiverz), and/or pyridostigmine (Mestinon, Regonol). This is not like other studies that may only focus on following doctors’ orders.

Completed
Anti-AChR antibody-positive generalized myasthenia gravis clinical research study
This placebo-controlled Phase 3 study is testing an investigational medicine called ravulizumab-cwvz, also known in this study as ALXN1210, on adults with anti-AChR antibody-positive, generalized myasthenia gravis (gMG).

Completed
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.

Case studies

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