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Cambridge Centre for Frontotemporal Dementia and Related Disorders

Department of Clinical Neurosciences

Studying at Cambridge


Topic 1 - Epidemiology & Genetics

The PiPPIN-2 Study

The PiPPIN (PIck's disease and Progressive supranuclear palsy Prevalence and INcidence) study is an observational study of patients with frontotemporal dementia (FTD), progressive supranuclear palsy (PSP), and corticobasal degeneration (CBD) in Cambridgeshire and Norfolk.

The first cohort of patients was recruited between January 2013 and December 2014 (PiPPIN-1 cohort). We are currently continuing this epidemiological work and recruiting for the second cohort.

The overall aim is to estimate the incidence and prevalence of these diseases in Cambridgeshire and Norfolk and to establish the frequency and characteristics of apathy and impulsivity in these patients.

The study has three levels:

a) Minimum data set with information from neurological and psychiatric services (no effort required by patient or carer);

b) Diagnostic validation, neuropsychological and cognitive testing (minimal or moderate effort for patients, adjusted to circumstances and ability, and short questionnaires for carers);

c) Brain imaging, and biomarkers (a bit more effort, but also can be fun to take part in);

If you would like participate in this study, please contract Dr Alexander Murley or Win Li.


The GENFI-2 study (a multi-centre study)

The Genetic Frontotemporal dementia Initiative (GENFI) is a multi-centre study across Europe and Canada with expertise in familial frontotemporal dementia (FTD). It is coordinated by Dr Jonathan Rohrer at University College London.

The major aim of the study is to investigate genetic frontotemporal dementia, particularly patients and healthy relatives in families where someone has a mutations in the progranulin (GRN), microtubule-associated protein tau (MAPT), or chromosome 9 open reading frame 72 (C9ORF72) genes.

GENFI investigates either people who have developed symptoms already or their healthy relatives. Understanding the development of FTD symptoms from the beginning is important to establish new biomarkers and preventative treatments. 

Importantly, healthy participants do not need to know their genes, and can take part with confidence, without finding out their genes.  If you would like to know more about this study, please contact Carolyn Timberlake.

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The GOLDeN Study

The GOLDeN (Genetics of Leucopathology, Dementia and Neurodegeneration) study is a large observational study designed to look at genes that might cause or prevent dementias, of all different types.  

The study will look at how genes and genetic variants contribute to dementia, neurodegenerative diseases, and memory problems. By identifying genes, one can build the links between the molecular biology and chemistry of degeneration, enabling the targeting of novel drug discovery programmes.

If you would like to know more about this study, please contact Lucy Bowns.

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The COGENT Study (collaboration)

The COGENT (Causes of COgnition and BEhavioural Changes in Neurodegeneration and DemenTia) study is a three-year observational study with two stages for patients with neurodegenerative diseases such as Alzheimer's disease, mild cognitive impairment (MCI), motor neuron disease (MND), frontotemporal dementia (FTD), corticobasal degeneration (CBD), and progressive supranuclear palsy (PSP).

Patients undergo memory testing and clinical assessments to investigate cognitive and behavioural changes, and a blood test for genetic and chemical markers. A subset of patients will have a brain scan to assess also the neurological underpinning of cognition and behaviour.

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Researchers and Nurses



Selected Publications

    • Turner, M. R., Al-Chalabi, A., Chio, A., Hardiman, O., Kiernan, M. C., Rohrer, J. D., Rowe, J., Seeley, W., & Talbot, K. (2017). Genetic screening in sporadic ALS and FTD. J Neurol Neurosurg Psychiatry. doi:10.1136/jnnp-2017-315995 PMID: 28642287
    • Lansdall, C. J., Coyle-Gilchrist, I. T. S., Jones, P. S., Vazquez Rodriguez, P., Wilcox, A., Wehmann, E., Dick, K. M., Robbins, T. W., & Rowe, J. B. (2017). Apathy and impulsivity in frontotemporal lobar degeneration syndromes. Brain, 140(6), 1792-1807. doi:10.1093/brain/awx101 PMID: 28486594
    • Mutsaerts, H., Petr, J., Thomas, D. L., De Vita, E., Cash, D. M., van Osch, M. J. P., Golay, X., Groot, P. F. C., Ourselin, S., van Swieten, J., Laforce, R., Jr., Tagliavini, F., Borroni, B., Galimberti, D., Rowe, J. B., Graff, C., Pizzini, F. B., Finger, E., Sorbi, S., Castelo Branco, M., Rohrer, J. D., Masellis, M., MacIntosh, B. J., & investigators, G. (2017). Comparison of arterial spin labeling registration strategies in the multi-center GENetic frontotemporal dementia initiative (GENFI). J Magn Reson Imaging. doi:10.1002/jmri.25751 PMID: 28480617
    • Premi, E., Grassi, M., van Swieten, J., Galimberti, D., Graff, C., Masellis, M., Tartaglia, C., Tagliavini, F., Rowe, J. B., Laforce, R., Jr., Finger, E., Frisoni, G. B., de Mendonca, A., Sorbi, S., Gazzina, S., Cosseddu, M., Archetti, S., Gasparotti, R., Manes, M., Alberici, A., Cardoso, M. J., Bocchetta, M., Cash, D. M., Ourselin, S., Padovani, A., Rohrer, J. D., Borroni, B., & Genetic, F. T. D. I. (2017). Cognitive reserve and TMEM106B genotype modulate brain damage in presymptomatic frontotemporal dementia: a GENFI study. Brain, 140(6), 1784-1791. doi:10.1093/brain/awx103 PMID: 28460069 PMC5445253
    • Coyle-Gilchrist, I. T., Dick, K. M., Patterson, K., Vazquez Rodriquez, P., Wehmann, E., Wilcox, A., Lansdall, C. J., Dawson, K. E., Wiggins, J., Mead, S., Brayne, C., & Rowe, J. B. (2016). Prevalence, characteristics, and survival of frontotemporal lobar degeneration syndromes. Neurology, 86(18), 1736-1743. doi:10.1212/WNL.0000000000002638 PMID: 27037234 PMC4854589
    • Rohrer, J. D., Nicholas, J. M., Cash, D. M., van Swieten, J., Dopper, E., Jiskoot, L., van Minkelen, R., Rombouts, S. A., Cardoso, M. J., Clegg, S., Espak, M., Mead, S., Thomas, D. L., De Vita, E., Masellis, M., Black, S. E., Freedman, M., Keren, R., MacIntosh, B. J., Rogaeva, E., Tang-Wai, D., Tartaglia, M. C., Laforce, R., Jr., Tagliavini, F., Tiraboschi, P., Redaelli, V., Prioni, S., Grisoli, M., Borroni, B., Padovani, A., Galimberti, D., Scarpini, E., Arighi, A., Fumagalli, G., Rowe, J. B., Coyle-Gilchrist, I., Graff, C., Fallstrom, M., Jelic, V., Stahlbom, A. K., Andersson, C., Thonberg, H., Lilius, L., Frisoni, G. B., Pievani, M., Bocchetta, M., Benussi, L., Ghidoni, R., Finger, E., Sorbi, S., Nacmias, B., Lombardi, G., Polito, C., Warren, J. D., Ourselin, S., Fox, N. C., Rossor, M. N., & Binetti, G. (2015). Presymptomatic cognitive and neuroanatomical changes in genetic frontotemporal dementia in the Genetic Frontotemporal dementia Initiative (GENFI) study: a cross-sectional analysis. Lancet Neurol, 14(3), 253-262. doi:10.1016/S1474-4422(14)70324-2 PMID: 25662776

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Hannah Diver created this moving short film about dementia and its impact as a 6th form project

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Interview about new article with Thomas Cope on ITV Anglia

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Emily Fisher, a postgraduate student from the Norwich University of the Arts, created an animated film about a person's experience suffering from Alzheimer's disease.

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Video abstract for the new article by Lansdall et al., (2017) published in Brain.

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