About the network
The FTD-ALS Research Network at Karolinska Institutet 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, medical 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.