The Friedrich-Baur-Institut (FBI Munich), part of the Department of Neurology at LMU Klinikum, is an outstanding specialist institution for neuromuscular diseases. In addition to routine care for in- and outpatients with neuromuscular diseases, FBI Munich runs several basic research projects and clinical trials, and it has established and hosts several patient registries for various neuromuscular diseases both in Germany and worldwide.

Their team brings together neurologists, clinical researchers, geneticists, data managers, physiotherapists and registry specialists, united by a shared commitment to advancing the diagnosis, care and treatment of people living with neuromuscular conditions.

We recently caught up with Prof. Benedikt Schoser and Dr. Natalia Garcia-Angarita of FBI Munich, who told us more about the institute’s mission, vision, and how they came to be involved in PaLaDIn.

What is FBI Munich’s mission, and what brought you to this work?

We are one of Europe’s leading centres for neuromuscular diseases, and our work spans the full spectrum from routine inpatient and outpatient care to basic research and clinical trials.

What motivates us is translation: turning research and accumulated clinical knowledge into tangible improvements in patients’ lives. Hosting national and international patient registries is a major part of this, because good quality data is the foundation for better care and better treatments.

What is your role in PaLaDIn?

We are leading Work Package 7 (WP7), which primarily involves creating and publishing a harmonised consensus dataset for the neuromuscular diseases FSHD and DM1, and developing a framework to govern future dataset updates.

In practical terms, this means we are working to agree on a common, standardised core set of data elements for these conditions, so that information collected in different places can be effectively compared and combined. We are also building the governance side: a structure that defines how that consensus dataset can be reviewed and updated over time as the field evolves. The aim is for this work to feed into the platform that will ultimately become the Interactium®.

WP7 initially focuses on two neuromuscular diseases: facioscapulohumeral muscular dystrophy (FSHD) and myotonic dystrophy type 1 (DM1). It brings together clinical and research expertise to define a harmonised consensus dataset for these conditions, and to establish a transparent framework for keeping the dataset current. By standardising what data is collected and how it is described, the work aims to make patient data more interoperable, reusable and useful for research and healthcare decisions.

What is your impression of the PaLaDIn project so far?

We are proud to be involved in this project, especially because of its genuine focus on patients. By collecting detailed data on patients’ health and experiences, the PaLaDIn consortium aims to make patients’ voices a key part of healthcare decisions. This goal aligns well with our existing approach at FBI Munich.

What difference do you hope to make through your involvement in PaLaDIn?

We want to help establish order and consistency in capturing neuromuscular disease data. By using a shared, harmonised core dataset, we can enable knowledge-sharing across different centres and countries, something that isn’t feasible now. This approach aims to speed up the development of effective treatments, enhance patient-reported outcome measures (PROMs), and help guide healthcare decisions. Focusing on leaving a solid consensus dataset and a sustainable framework will be a valuable contribution for patients with FSHD, DM1, and other conditions.

To find out more about FBI Munich, see here. More information can also be found here.