FPI Consortia

GENFI is a familial frontotemporal dementia (FTD) observational cohort study based in Europe and Canada. It consists of over 34 sites, with over 100 researchers and over 1,500 participants. The current focus of the study is to develop biomarkers of proximity to symptom onset, as well as investigate the use of digital biomarkers and remote monitoring in order to help find treatments for genetic causes of FTD.

For more information, visit www.GENFI.org.

ALLFTD is a longitudinal observational cohort study that follows individuals with FTD. It includes familial cases of FTD, as well as those without a family history. There are currently over 28 sites and 100 researchers included in the study, as well as over 2,000 participants – almost half of which come from a family with a genetic form of FTD. The overall aim of the project is to prepare for FTD treatment trials by better understanding biomarkers, disease onset, and disease progression, as well as to build a network of expert FTD research centers.

For more information, visit www.allftd.org.

The ReDLat consortium aims to better characterise dementia and help identify ways to treat neurodegeneration in a diverse population. The consortium has sites in Argentina, Brazil, Chile, Colombia, Mexico and Peru, and works in collaboration with the University of California, San Francisco (UCSF) Memory and Aging Center, Medical Biodynamics Center at Mass general Brigham Incorporated, Harvard Medical School and Weill Cornell Medicine in the USA and Trinity College Dublin in Ireland. It is an observational cohort study that follows individuals with all types of FTD.

For more information, visit https://red-lat.com.

DINAD investigates familial forms of FTD and dementia with Lewy bodies. With its primary recruitment site in Sydney, Australia, DINAD is closely linked with FRONTIER, the FTD clinical research group at the University of Sydney. The current focus of DINAD is to identify early clinical, biological, and neuroimaging markers of disease onset in the familial forms of these dementias, as well as to identify suitable participants for clinical trials, in collaboration with the Royal Prince Alfred Hospital.

For more information, visit www.frontierftd.org.

FTDGeNZ is a familial FTD observational cohort based at the University of Auckland, New Zealand. It was established in 2016 and consists of a single large family with the MAPT 10+16 mutation. Their focus is on identifying pre-symptomatic biomarkers of FTD in order to provide an opportunity to intervene at the earliest possible stage. They are investigating a wide variety of potential biomarkers in their cohort, including imaging and fluid biomarkers, cognition and mood, olfaction, retinal structure and function, and vestibular function.

For more information, visit https://www.tandfonline.com/doi/full/10.1080/03036758.2022.2101483.

The SEA-FTD consortium follows individuals with all types of FTD and is made up of 6 countries across the region: Singapore, Indonesia, Philippines, Taiwan, Hong Kong, and Malaysia.

LEAF is a Korean early onset dementia cohort which started in April 2021. It includes 31 centers across Korea and almost 80 patients with sporadic and familial FTD have been enrolled. LEAF-FTD is one of the sub-studies of LEAF (LEAF-AD, LEAF-FTD, and LEAF-Other early onset dementia) and recruits patients with all types of FTD.

FTLD-J is a multicenter collaborative study of neurologists and psychiatrists from all over Japan involved in the treatment and research of FTLD. The study aims to 1) elucidate the natural history of FTLD in Japan; 2) collect biological samples; 3) estimate the frequency of familial FTLD; 4) establish early diagnostic methods as a basis for future clinical trials; and 5) recruit FTLD patients for future clinical trials. To date, 266 sporadic and familial FTLD-spectrum cases have been registered at 26 centers nationwide. The FTLD-J registry is expected to play a valuable role as a platform for clinical trials conducted in Japan.

The Cognitive Disorders Clinic (CDC) team at The National Institute of Mental Health and Neurosciences (NIMHANS) conducts clinical, epidemiological and basic research to understand risk and protective factors, clinical profiles, imaging patterns and genetic mechanisms underlying dementia in the Indian context. Approximately 1,500 patients with dementia have been seen at the CDC, with basic sociodemographic, clinical, imaging, and neuropsychological data, as well as information about caregiver stress and burden, collected. Genetic data is available for 150 families with FTD and Alzheimer’s disease (AD), finding 38.8% of 150 patients with FTD have a family history. The consortium focuses on detecting established genes and novel variants in persons living with FTD, with the hopes of facilitating the understanding of familial FTD in a diverse context. They also strive towards implementing state-of-the-art medical and non-pharmacological treatment for persons living with dementia and their families.

The CFFC was initiated in 2022. With the support of the Dementia and Cognitive Impairment Group of Neurology Society of Chinese Medical Association, the CFFC aims to build a Chinese longitudinal familial FTLD cohort and and promote new therapeutic strategies for FTD in China. Presently, the CFFC is composed of 7 hospitals throughout China, with plans to welcome more institutions in the near future. The CFFC welcomes more institutions to join them in the near future. The aim of the study is to develop voice-based digital biomarkers, particularly for patients with primary progressive aphasia (PPA), and to set up a behavioral assessment scale suitable for Chinese patients with behavioral variant FTD (bvFTD).