About the network
The FTD-ALS Research Network at ̽»¨¾«Ñ¡ is a multidisciplinary consortium aiming to integrate frontotemporal dementia (FTD) and amyotrophic lateral sclerosis (ALS) research with the vision that these diseases belong to the same spectrum, and to formulate innovative research questions from a joint FTD-ALS perspective. The network will fill gaps in both research and clinical practice to benefit patients and families.
ALS and FTD are two severe neurodegenerative diseases with great impact on patients, relatives and society. FTD is one of the most common causes of early-onset dementia and presents with social and behavioral and/or language impairments that can be accompanied by motor disorder. ALS is primarily characterized by motor dysfunction with a rapid progression.
Traditionally, ̽»¨¾«Ñ¡ research on FTD and ALS is conducted by separate research groups. However, there is growing scientific evidence supporting that FTD and ALS belong to the same spectrum of diseases, with overlapping symptoms, underlying genetic causes, and neuropathological changes.
Currently however, healthcare in Sweden and in other countries treats FTD and ALS patients in completely different clinical specialties, which means that the full spectrum of symptoms and biomarkers goes undetected. This is especially problematic in families carrying genetic mutations associated with both FTD and ALS phenotypes, including C9orf72, or the rarer TARDBP, FUS, TBK1, and VCP genetic forms, and where individual patients often present with mixed FTD-ALS phenotypes.
With this network initiative, we aim to build a bridge between the research and clinical activities surrounding FTD and ALS at Karolinska Institute and Hospital, and to rephrase our research questions from a joint effort to explore the full spectrum.
Mission
- The overarching purpose is to promote exchange of ideas and establish new collaborative projects to bridge activities between research and clinical groups at KI currently working separately in the FTD and ALS fields, into a common FTD-ALS spectrum field.
- To harmonize our research protocols for sample biomarker collection, neuroimage acquisition, postmortem tissues, and registry databases, towards a shared minimal dataset.
Working Groups
Working Group 1 CLINIC
Clinical evaluation, Cognition and Language, Epidemiology, Registry research & Health economics, Clinical trials, Industrial partners, Outreach and Participant engagement.
This working group focuses on clinical assessment of individuals with FTD and/or ALS, with a particular emphasis on diagnostic tools. The aims are to review the current assessment practices, explore the differences and overlap between the two diseases, and harmonise evaluation protocols. Special attention will be given to cognitive, behavioral, and language changes.
The working group is responsible for coordinating research efforts related to health data registries. Its primary focus is to optimize the use of existing registries by identifying best practice and enhancing interoperability across different registry systems. Additionally, the working group evaluates registry use from a health economics perspective, aiming to support cost-effective healthcare delivery and informed decision-making.
The focus is also on current and future clinical trials and to argue for inclusion of both FTD and ALS phenotypes when applicable (for example C9orf72 targeting treatment). It will also discuss potential collaborations and partnerships with industry to facilitate the development of FTD and ALS research. Finally, the group will plan and organize international and national conferences and meetings to further increase awareness of the FTD-ALS overlap and scientific discoveries. The aim is to increase awareness about the FTD-ALS spectrum and improve access to clinical trials for both FTD and ALS patients.
Working Group 2 BIOLOGY
Genetics, Molecular mechanisms and Pathology, Protein profiling, Imaging and Electrophysiology. 
This working group focuses on the genetics behind ALS and FTD, the neuropathology observed in the two diseases,     as well as the molecular mechanisms underpinning the pathological processes. The aim of the working group is to explore the shared genetic causes and joint neuropathologies of ALS and FTD to identify targets for functional studies. 
The group also focuses on the analysis of fluid biomarkers, neuroimaging data, and electrophysiological measures. The aim is to identify reliable biological signatures of ALS and FTD, improve understanding of disease mechanisms, and support early diagnosis and monitoring. 
Working Group 3 INFRASTRUCTURE
Database infrastructure & Data and Sample collections.
This working group is responsible for developing and maintaining secure and user-friendly systems for managing clinical, genetic, and biomarker data across research teams. The aim is to build a robust, standardized infrastructure that streamlines workflows, enhances data sharing, and reduces the need for extensive quality control through built-in checks.
The group is also responsible for overseeing and improving the processes related to the collection, handling, and storage of biological samples. The aim is to harmonize sample collection protocols across sites and studies, promote best practices in biobanking, and address logistical, legal, and ethical considerations associated with sample collection.
