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Cambridge Centre for Frontotemporal Dementia and Related Disorders

Department of Clinical Neurosciences

Studying at Cambridge

 

Topic 5 - Longitudinal Cohorts

Longitudinal cohorts - in general

There is a lot still to be learned about how FTD, PSP, CBD, and related illnesses change over time - why do some people progress faster than others? Why do symptoms change so much over time? Why do two different diseases sometimes look alike? What should we measure to know if a treatment is lowing the illness down?

To answer these questions, and to know how to build better clinical trials of the right drug in the right patients, and the right outcomes, we have established several key longitudinal cohorts, working with patients and families to study the illnesses over years. This is critical to identify new biomarkers, distinguish different types of dementia, predict outcomes, and design better trials. 


 

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 of 204 patients was recruited between January 2013 and December 2014 (PiPPIN-1 cohort). We are currently continuing this epidemiological work and recruiting for in a second study phase, 2017-2018.

The overall aim is establish the frequency and characteristics these illnesses, and to study in detail the causes of apathy and impulsivity which affect so many patients.

The study has three stages:

a) Minimum data set with information from neurological and psychiatric services;

b) Diagnostic validation, neuropsychological and cognitive testing;

c) Brain imaging, biomarkers from blood, neuropathology, and naturalistic activity monitoring;

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

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The GENFI-2 Initiative (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, with healthy people and patients in families where someone has a mutation in the progranulin (GRN), microtubule-associated protein tau (MAPT), or chromosome 9 open reading frame 72 (C9ORF72) genes. GENFI investigates people who have developed symptoms already and their healthy relatives. 

Importantly, healthy relatives in GENFI do not need to know their genes and will not find out about their genes as a result of taking part.  This means that one can take part with confidence, helping research into the illness without having to worry about gene testing. 

If you would like to know more, please contact Carolyn Timberlake

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PROSPECT-M-UK (a multi-centre study)

PROSPECT-M-UK is a multi-centre longitudinal study conducted at seven sites in the UK and coordinated by the PSP Association national research network, founded in 2014.  The overall aim is to improve the early diagnosis of PSP, MSA, and CBD, advance the understanding of these diseases, and establish a platform for clinical trials. 

Participants are invited to either a "light" participation, with registration of their illness and home based questionnaires, or a "full" study assessment with:

  • clinical assessment
  • blood sample
  • neuropsychological ('memory') testing
  • questionnaires
  • an up to date  MRI brain scan

If you would like to know more, please contact Carolyn Timberlake.

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The NIMROD Project

The NIMROD (Neuroimaging of Inflammation in MemoRy and Other Disoders) project is a longitudinal study for patients with neurodegenerative disease, dementia, and depression. It is led by Professor John T. O'Brien and Professor James B. Rowe.

The main objective of this study is to determine the role of inflammation in the development of different types of dementia. Data from patients with Alzheimer's disease, Lewy Body dementia, Progressive Supranuclear Palsy, mild cognitive impairment, Parkinson's disease, late life depression, and vascular dementia are annually assessed by means of brain imaging, neuropsychology, and blood biomarker analyses.

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MLSE Language Assessment for patients with Primary Progressive Aphasia (PPA)

This study is a collaboration between Professor Peter Garrard at the St George's University in London, Professor James B. Rowe and Professor Karalyn Patterson in Cambridge. The primary aim of this project is to develop and fully validate a short but effective language test kit, for patients with primary progressive aphasia (PPA). The instrument is called Mini Linguistic State Examination (MLSE) and will be validated in English and Italian by means of questionnaires, neuropsychological tasks, and brain imaging.

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Diagnosis and prognosis in frontotemporal dementia, progressive supranuclear palsy and corticobasal degeneration. 

This study has been running since 2007, and is largely superseded by PIPPIN, GENFI-2 and PROSPECT-M-UK studies, in assessing diagnostic and prognostic biomarkers in these related illnesses.  Data from this study have been instrumental in understanding the impact of disease on cognition, brain networks, and survival, as well as providing the essential context in which to interpret neuropathology studies at the Cambridge Brain Bank

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Researchers and Research Nurses

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Selected publications

  • Passamonti, L., Vazquez Rodriguez, P., Hong, Y. T., Allinson, K. S., Williamson, D., Borchert, R. J., Sami, S., Cope, T. E., Bevan-Jones, W. R., Jones, P. S., Arnold, R., Surendranathan, A., Mak, E., Su, L., Fryer, T. D., Aigbirhio, F. I., O'Brien, J. T., & Rowe, J. B. (2017). 18F-AV-1451 positron emission tomography in Alzheimer's disease and progressive supranuclear palsy. Brain, 140(3), 781-791. doi:10.1093/brain/aww340 PMID: 28122879 PMC5382948
  • Bevan-Jones, W. R., Surendranathan, A., Passamonti, L., Vazquez Rodriguez, P., Arnold, R., Mak, E., Su, L., Coles, J. P., Fryer, T. D., Hong, Y. T., Williams, G., Aigbirhio, F., Rowe, J. B., & O'Brien, J. T. (2017). Neuroimaging of Inflammation in Memory and Related Other Disorders (NIMROD) study protocol: a deep phenotyping cohort study of the role of brain inflammation in dementia, depression and other neurological illnesses. BMJ Open, 7(1), e013187. doi:10.1136/bmjopen-2016-013187 PMID: 28064175 PMC5223666
  • 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
  • Sudre, C. H., Bocchetta, M., Cash, D., Thomas, D. L., Woollacott, I., Dick, K. M., van Swieten, J., Borroni, B., Galimberti, D., Masellis, M., Tartaglia, M. C., Rowe, J. B., Graff, C., Tagliavini, F., Frisoni, G., Laforce, R., Jr., Finger, E., de Mendonca, A., Sorbi, S., Ourselin, S., Cardoso, M. J., Rohrer, J. D., & Genetic Ftd Initiative, G. (2017). White matter hyperintensities are seen only in GRN mutation carriers in the GENFI cohort. Neuroimage Clin, 15, 171-180. doi:10.1016/j.nicl.2017.04.015 PMID: 28529873 PMC5429247
  • Su, L., Faluyi, Y. O., Hong, Y. T., Fryer, T. D., Mak, E., Gabel, S., Hayes, L., Soteriades, S., Williams, G. B., Arnold, R., Passamonti, L., Rodriguez, P. V., Surendranathan, A., Bevan-Jones, R. W., Coles, J., Aigbirhio, F., Rowe, J. B., & O'Brien, J. T. (2016). Neuroinflammatory and morphological changes in late-life depression: the NIMROD study. Br J Psychiatry, 209(6), 525-526.
  • 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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Interview about new article with Thomas Cope on ITV Anglia

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

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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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