Publications
PaLaDIn publications are linked below and they can also be viewed on our project Zenodo page.
Toward a Therapy-Agnostic FSHD Disease Progression Model for HTA: Workplan and Progress from PaLaDIn
Click here to view the poster presented by PaLaDIn partner FSHD Society.
Project Mercury: 3-Year Progress Report on Global FSHD Trial Readiness and Patient Access
Click here to view the poster from Project Mercury presented by PaLADIn partner FSHD Society.
Harmonizing Clinical Monitoring in FSHD
Click here to view the poster from the 295th ENMC International Workshop presented by PaLaDIn partner FBI Munich.
Systematic review of outcome measures in facioscapulohumeral dystrophy (FSHD): validated, usable, and feasible tools for assessing function, performance, and strength
This systematic review evaluated the psychometric properties, feasibility, and comprehensiveness of published function-based outcome measures in FSHD, to help guide late-phase trials, and clinical practice. Published in Neuromuscular Disorders.
To read the publication, click here.
Project Mercury - Interim Progress Report 2023-2025
The global initiative, Project Mercury was established in 2023 to address critical challenges hindering new treatments from reaching FSHD patients. The interim report provides an in-depth overview of Project Mercury and the progress and key results achieved to date.
To read the Interim Report, click here.
Why is Project PaLaDIn needed, and what problems will it solve?
There is an urgent need to collect more patient derived data to improve research and healthcare decision making. This need is highest for patients with rare and complex diseases.
This PaLaDIn position paper looks at the key challenges for rare and neuromuscular diseases and explains how Project PaLaDIn aims to address these.
To read the full position paper, click here.
