Applicant Guide
Canadian Consortium on Neurodegeneration in Aging (CCNA) Phase III – Research Teams

Table of Contents

1. Introduction

As specified in the "Canadian Consortium on Neurodegeneration in Aging (CCNA) Phase III: Research Teams" funding opportunity, this Applicant Guide is the sole source of information for applicant teams to learn more about the CCNA Operations Centre, including its Central Research Support and Data and Biological Samples holdings.

The Applicant Guide will be the only source of information used by peer reviewers to assess feasibility of planned research projects and associated activities as it relates to the CCNA Operations Centre. Applicants are encouraged to reference the information (section and page number) found in this applicant guide in their applications to the Canadian Institutes of Health Research (CIHR), as applicable.

Please Note: Information acquired from other online sources related to the CCNA may be outdated and should not be used to develop applications. In addition, applicant teams must not communicate directly with the CCNA Operations Centre in developing applications for this funding opportunity. All inquiries should be directed to the CIHR Contact Centre (support-soutien@cihr-irsc.gc.ca or 1-888-603-4178).

Disclaimer: Information included in this Applicant Guide was developed by the CCNA Operations Centre in collaboration with CIHR. CIHR is not responsible for any errors, omissions, or for the results obtained from the use of this information.

2. CCNA Central Research Support

In CCNA Phase III, the creation of a Central Research Support was a significant milestone aimed at catalyzing and supporting research efforts across various domains. Central Research Support comprises several specialized programs designed to provide comprehensive guidance, resources, and collaboration opportunities to enhance the quality and impact of dementia research.

These programs include:

These programs will be available to support successful CCNA Phase III research teams and cannot be accessed during the development of your application.

2.1 Knowledge Mobilization (KM)

The Knowledge Mobilization (KM) program will be available to provide consultation and guidance on:

  1. Expanding and refining the project's KM plan including key messages, KM goals, and KM products that will support the goals.
  2. Tailoring KM products to specific audiences, for example, adapting scientific language to plain language.
  3. Disseminating KM products, including leveraging CCNA partnerships, when appropriate.
  4. Engaging relevant knowledge users throughout the project.
  5. Evaluating the achievement of KM goals.
  6. Using relevant evidence from the KM scientific literature and KM tools.

2.2 Training and Capacity Building (TCB)

The Training and Capacity Building (TCB) program will:

  1. Maintain an online resource library for trainees to access training for developing skills related to the logistics of conducting research, how to prepare research proposals, how to prepare and build a successful grant application, budgeting, research standards, and ethics submissions.
  2. Act as a central research support for trainees on best practices regarding how to access and work with the Comprehensive Assessment of Neurodegeneration and Dementia Study (COMPASS-ND) study data using the Longitudinal Online Research and Imaging System (LORIS) platform.
  3. Foster networking and career development of trainees through networking opportunities such as the CCNA's annual scientific meeting - "Science Days and Partners Forum."
  4. Provide interdisciplinary training and capacity building by continuing to build our existing CCNA Investigator Member database, connecting mentors and mentees for one-year mentorship experiences. Investigators in Phase III will be invited and strongly encouraged to join our mentor pool and may be matched with mentees based on alignment of: (i) mentors' experiences, areas of expertise, and research interests, with (ii) mentees' research interests, career stage and goals, and identified areas of growth.

2.3 Indigenous Cognitive Health Program (ICH)

The Indigenous Cognitive Health (ICH) program will be available to provide consultation and guidance on:

  1. Indigenous data access and publication requests.
  2. Capacity building for Indigenous-led and Indigenous-informed research.
  3. Capacity building for Indigenous-led and Indigenous-informed knowledge mobilization.

2.4 The Engagement of People with Lived Experience of Dementia (EPLED)

The Engagement of People with Lived Experience of Dementia (EPLED) program works to enable those with lived experience of dementia (i.e., people living with dementia, caregivers/care partners, friends and family) to be meaningfully and actively involved in research. The EPLED program will be available to provide consultation and guidance to Research Teams on engaging people with lived experience of dementia in their proposed research. The EPLED program will also facilitate engagement activities in the proposed research, if the research aligns with the interests of the EPLED Advisory Group or its individual members.

2.5 Women Sex Gender and Dementia (WSGD)

The Women Sex Gender and Dementia (WSGD) program will be available to provide consultation and guidance on:

  1. Incorporation of sex and gender into research design for specific projects.
  2. Determining the sex and gender knowledge and knowledge needs of dementia researchers.
  3. Using sex and gender methods and measures through webinars/talks/access to resources.
  4. Mining the COMPASS-ND with a sex and gender lens.
  5. Considerations of inclusion, diversity, equity, accessibility, and intersectionality in dementia research.
  6. Inclusion of sex and gender in programs and publications in professional societies.
  7. Evaluating the achievement of the incorporation of sex and gender in dementia research.

3. CCNA Data and Biological Samples

3.1 Overview

The Comprehensive Assessment of Neurodegeneration and Dementia (COMPASS-ND) is the clinical cohort study of CCNA. This unique cohort study includes a wide range of neurodegenerative conditions to enable comparisons across disease states and the identification of common and unique factors across these diseases. The Initial Assessment of COMPASS-ND comprises a wealth of data collected from over 1,150 participants across 32 testing sites and spans 10 syndrome cohorts and a control group. See below for a demographic overview of the participant groups.

Cohort Diagnosis Tally Women Education (mean, in years) Age (mean, in years)
CU Cognitively unimpaired 176 62.5% 15.6 69.9
SCI Subjective cognitive impairment 149 65.8% 15.9 69.9
MCI Mild cognitive impairment (MCI) 280 37.5% 15 71.2
V-MCI MCI with silent vascular lesions 152 47.4% 14.6 76.2
AD Alzheimer's disease 113 44.2% 15 72.9
Mixed Mixed dementia 87 48.3% 14.9 77.3
FTD Frontotemporal dementia 40 45.0% 14.6 64.3
PD Parkinson's disease 82 45.1% 15.8 66.8
PD-MCI Parkinson's disease with MCI 45 15.6% 15.4 71.3
PDD Parkinson's disease dementia 16 6.3% 15.9 76.9
LBD Lewy body disease 32 6.3% 14.7 72.8
Other Other dementia 2 0.0% 15 78.8
Overall 1,173 46.5% 15.2 71.9
Age Years
Minimum 42.1
Maximum 91
Mean 71.9
Education Years
Minimum 3
Maximum 23
Mean 15.2
Testing language Percent
English 89.3%
French/bilingual 10.7%
Community Percent
Urban 59.0%
Suburban 30.7%
Rural 10.3%
Ethnicity Percent
White 92.1%
Visible minority 7.9%

New Demographic overview of the caregiving assessment data in COMPASS-ND (Updated: 2024-11-14)

The following tables provide a demographic overview of the caregiving assessment data in COMPASS-ND; both participants and/or their respective primary informants may report being caregivers.

Participants
Cohort Diagnosis Number of caregivers Female (%) Education (mean, in years) Age (mean, in years)
CU Cognitively unimpaired 52 61.5% 15.2 69.3
SCI Subjective cognitive impairment 58 67.2% 16 69.2
MCI Mild cognitive impairment (MCI) 92 38% 15 70.7
V-MCI MCI with silent vascular lesions 40 32.5% 14.2 75.9
AD Alzheimer's disease 21 33.3% 16.1 73.1
Mixed Mixed dementia 18 55.6% 14.4 75.5
FTD Frontotemporal dementia 12 50% 13.7 66.9
PD Parkinson's disease 21 42.9% 16.8 67.1
PD-MCI Parkinson's disease with MCI 11 18.2% 16.2 68.9
PDD Parkinson's disease dementia 2 0% 13 82.7
LBD Lewy body disease 3 33.3% 13 78.9
Overall 330 46.7% 15.2 70.9
Primary Informant (an individual who has regular and weekly interactions with the participant)
Cohort Number of caregivers Female (%) Education (mean, in years) Age (mean, in years)
Primary informant 500 68% 15.2 70
All Caregivers in the COMPASS-ND Study
Cohort Number of caregivers Female (%) Education (mean, in years) Age (mean, in years)
Participant 330 46.7% 15.2 70.9
Primary informant 500 68% 15.2 70
Overall 830 57.4% 15.2 70.5
Age Years
Minimum 29
Maximum 94
Mean 70.5
Education Years
Minimum 4
Maximum 23
Mean 15.2

3.1.1 Data Collected

Collected data include extensive clinical, cognitive, and neuropsychological measures, as well as objective sensory measures, clinically verified diagnoses, psychosocial and neuropsychiatric measures, and study partner questionnaires. In addition to alphanumeric data, the study also captures standardized 3T neuroimaging, recorded speech, and biological samples that yielded plasma, serum, and cerebrospinal fluid (CSF) biomarkers as well as genetic data. Saliva samples collected cohort-wide are currently undergoing microbiome analyses, and these results are currently not available.

Figure 1 long description

The COMPASS-ND data include:

  • Standardized 3T neuroimaging
  • Objective sensory measures
  • Clinically verified diagnoses
  • Psychosocial and neuropsychiatric measures
  • Conversational speech recordings
  • Genetics
  • Serum, plasma, & CSF biomarkers
  • Microbiome samples (Results will be made available in 2025)
  • Study partner questionnaires
  • Longitudinal data collection

The deeply-phenotyped data are collected over multiple, in-person visits; together, these visits capture the Initial (Baseline) data for the study. A list of data instruments and measures can be found in Appendix A: COMPASS-ND Baseline Data.

3.1.2 Key Publications

See the following key publications for protocols relating to COMPASS-ND, the online Longitudinal Online Research and Imaging System (LORIS), magnetic resonance imaging (MRI) harmonization across testing sites, and our neuropsychology test battery.

COMPASS-ND Study

Chertkow, H., Borrie, M., Whitehead, V., Black, S.E., Feldman, H.H., Gauthier, S., Hogan, D.B., Masellis, M., McGilton, K., Rockwood, K., Tierney, M.C., Andrew, M., Hsiung, G.R., Camicioli, R., Smith, E.E., Fogarty, J., Lindsay, J., Best, S., Evans, A., Das, S., Mohaddes, Z., Pilon, R., Poirier, J., Phillips, N.A., MacNamara, E., Dixon, R.A., Duchesne, S., MacKenzie, I., & Rylett, R.J. (2019). The Comprehensive Assessment of Neurodegeneration and Dementia: Canadian Cohort Study. The Canadian Journal of Neurological Sciences, 46(5), 499-511. DOI: 10.1017/cjn.2019.27. PMID: 31309917.

Data Management System (LORIS)

Mohaddes, Z., Das, S., Abou-Haidar, R., Safi-Harab, M., Blader, D., Callegaro, J., Henri-Bellemare, C., Tunteng, J.F., Evans, L., Campbell, T., Lo, D., Morin, P.E., Whitehead, V., Chertkow, H., & Evans, A.C. (2018). National Neuroinformatics Framework for Canadian Consortium on Neurodegeneration in Aging (CCNA). Frontiers in Neuroinformatics, 12, 85. DOI: 10.3389/fninf.2018.00085. PMID: 30622468; PMCID: PMC6308193.

Multisite Imaging Data Harmonization Process

Duchesne, S., Chouinard, I., Potvin, O., Fonov, V.S., Khademi, A., Bartha, R., Bellec, P., Collins, D.L., Descoteaux, M., Hoge, R., McCreary, C.R., Ramirez, J., Scott, C.J., Smith, E.E., Strother, S.C., Black, S.E., for the CIMA-Q group and the CCNA group. (2019). The Canadian Dementia Imaging Protocol: Harmonizing National Cohorts. Journal of Magnetic Resonance Imaging, 49(2), 456-465. DOI: 10.1002/jmri.26197; PMID: 30635988.

Neuropsychology Research Tests

Phillips, N.A., Fogarty, J., Pilon, R., Whitehead, V., Best, S., Di Prospero, C., Fouquet, C., Beuk, J., Mohades, Z., Das, S., Anderson, N., Belleville, S., Brambati, S., McLaughlin, P., Chertkow, H., Borrie, M. (submitted to the Canadian Journal of Aging). The Comprehensive Assessment of Neurodegeneration (COMPASS-ND) Study neuropsychology battery of the Canadian Consortium for Neurodegeneration in Aging (CCNA): Design overview and initial validation.

3.2 Data Access

CCNA is committed to maximizing the use of data by Canadian scientists. Study data are housed on LORIS, CCNA's data management platform.

3.2.1 Process for Data Access Request

3.3 Fluid Biomarkers and Biological Sample Access

Biological samples were collected on 95% of the study participants at the time of the Initial Assessment. Plans are in place to collect longitudinal samples, but this work has not yet been undertaken. Collected biosamples include blood, saliva, and urine, as well as cerebrospinal fluid (CSF) in approximately 13% of participants. Extensive, routine analyses have already been carried out on the existing samples, yielding plasma, serum, and CSF biomarkers as well as genetics. Please see Appendix B: COMPASS-ND Fluid Biomarker Data for the list of results available in the LORIS database.

In addition to running routine analyses on the collected biological materials, the study has stored samples of these materials at the Canadian Biosample Repository (Edmonton, Alberta) for future research projects. In the scope of this funding opportunity, researchers are permitted to study biomarkers beyond those measured in COMPASS-ND by undertaking the sample request process outlined below and running their own analyses.

3.3.1 Process for Fluid Biomarkers and Biological Sample Access Request

4. Contact Information

If you have any questions on this Applicant Guide or on the "Canadian Consortium on Neurodegeneration in Aging (CCNA) Phase III: Research Teams" funding opportunity, you must direct all inquiries to the CIHR Contact Centre, Monday to Friday, 7:00 a.m. to 8 p.m. EDT.

CIHR Contact Centre
Telephone: 613-954-1968
Toll Free: 1-888-603-4178
E-mail: support-soutien@cihr-irsc.gc.ca

Appendix A: COMPASS-ND Baseline Data

Screening Assessment

Recruitment

Screening Tests

All Cohorts
Cognitively Unimpaired (CU), Subjective Cognitive Impairment (SCI), & AD Spectrum (MCI, V-MCI, AD)Footnote 1
FTD Spectrum (bvFTD, PPA, CBS, & PSP)Footnote 2 & LBD Spectrum (PD, PD-MCI, PDD, & LBD)Footnote 3
Mixed Dementia
Sociodemographic Information

Clinical Assessment

General Health

Psychosocial Measures

Sensory Measures

Medical and Family History

Disease Signs, Symptoms, and Onset

Physical and Neurological Assessment

Primary Informant Questionnaire

Neuropsychology Assessment

Premorbid IQ

Memory

Visual Perception and Construction

Attention, Working Memory, and Processing Speed

Speech and Language

Complex Attention and Executive Function

Neuroimaging Assessment

Imaging Sequences

MRI Reports

Volumetrics

Appendix B: COMPASS-ND Fluid Biomarker Data

Blood Biomarkers

General Health

Inflammation

Lipidomics

Synaptic Function & Plasticity

Hormone Profile

Oxidative Stress

SIMOA Biomarkers

CSF Biomarkers

Genetics

Microbiome

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