ONDRI's Legacy Page - DRAFT

The Ontario Neurodegenerative Disease Research Initiative's Legacy

Introduction

The Ontario Neurodegenerative Disease Research Initiative (ONDRI) was created during OBI’s earliest phase to address neurodegeneration and dementia – a disorder in which progressive decline in thinking ability and memory significantly impairs the daily function of an individual and affects society as a whole.

ONDRI researchers devised unique studies where cohorts of participants living with one of several diseases (that can cause dementia) followed the same protocols across common platforms. The objective was to hone in on commonalities and differences, both within and across these neurodegenerative diseases and platforms.

The principal investigators over ONDRI’s two phases were Dr. Mike Strong, Dr. Doug Munoz, Dr. Mario Masellis and Dr. Richard Swartz.

The Foundational Study

(2013-2018)

ONDRI’s Foundational Study focused on building a deeply characterized cross-disease, cross-platform

database, in order to inform an improved understanding of neurodegeneration and its impacts on people living with these diseases and their care partners. Data from this study are being utilized by ONDRI researchers along with other researchers around the world, to uncover related discoveries.

Seizure Resources for Patients, Women, Families, & Teachers

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Epilepsy Referral Pathway & Navigating the Healthcare System

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  • Referral Pathway

    go into each link to find copy to add information

    Types of Seizures

  • Transitioning from Pediatric to Adult Healthcare

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Resources for Healthcare Providers

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COVID-19 Epilepsy Resources

Highlighted Publications

  1. Barnett AJ, Man V, McAndrews MP. Parcellation of the hippocampus using resting functional connectivity in temporal lobe epilepsy. Frontiers in neurology. 2019 Aug 22;10:920.
  2. Borlot F, Regan BM, Bassett AS, Stavropoulos DJ, Andrade DM. Prevalence of pathogenic copy number variation in adults with pediatric-onset epilepsy and intellectual disability. JAMA neurology. 2017 Nov 1;74(11):1301-11.
  3. Chang M, Dian JA, Dufour S, Wang L, Chameh HM, Ramani M, Zhang L, Carlen PL, Womelsdorf T, Valiante TA. Brief activation of GABAergic interneurons initiates the transition to ictal events through post-inhibitory rebound excitation. Neurobiology of disease. 2018 Jan 1;109:102-16.
  4. Hum KM, Chan CJ, Gane J, Conway L, McAndrews MP, Smith ML. Do distance-delivery group interventions improve depression in people with epilepsy?. Epilepsy & Behavior. 2019 Sep 1;98:153-60.
  5. Singh A, Woelfle R, Chepesiuk R, Southward C, Antflick J, Cowan K, Hum K, Ng M, Burneo JG, Marti AS. Canadian epilepsy priority-setting partnership: Toward a new national research agenda. Epilepsy & Behavior. 2022 May 1;130:108673.
  6. Turnbull J, Epp JR, Goldsmith D, Zhao X, Pencea N, Wang P, Frankland PW, Ackerley CA, Minassian BA. PTG protein depletion rescues malin‐deficient Lafora disease in mouse. Annals of neurology. 2014 Mar;75(3):442-6.
  7. Whiting S, Donner E, RamachandranNair R, Grabowski J, Jetté N, Duque DR. Decreased health care utilization and health care costs in the inpatient and emergency department setting following initiation of ketogenic diet in pediatric patients: the experience in Ontario, Canada. Epilepsy research. 2017 Mar 1;131:51-7.

Community Advisory Committee

Connecting the epilepsy community with the EpLink research program, the Community Advisory Committee was responsible for:

  • Understanding the goals and objectives of EpLink research projects
  • Providing valuable experience and input for the direction of EpLink's research
  • Sharing research updates with Community Epilepsy Agencies, people living with epilepsy, and families
  • Building connections between OBI, industry, research, and patient groups
  • Assisting with fundraising events, public education events, and engaging members of the epilepsy community

Acknowledgements

We wish to thank the following groups for their valuable contributions to epilepsy research.

EpLink Co-Directors:

  • Mary Pat McAndrews, PhD, CPysch
  • McIntyre Burnham, PhD
  • Sharon Whiting, MBBS, FRCPC

EpLink Staff Members:

  • Amaya Singh, PhD
  • Hamed Moazami, MSc
  • Sahil Patel, BSc

Community Epilepsy Agencies:

  • Joanna Kapusta, CAC Chair (Epilepsy Toronto)
  • Drew Woodley (Epilepsy Ontario)
  • Jayme Arts (Epilepsy Southwestern Ontario)
  • Jo-Anne Welton (Epilepsy North Bay)
  • Michelle Franklin (Epilepsy Southwestern Ontario)
  • Nikki Porter (Epilepsy Ottawa)

Community Members:

  • Andrea Cameron
  • Ann Perl
  • Gena Meldazy
  • Nancy Mingo, MD
  • Natasha Causton
  • Sangeeta Staley
  • Shelly Philip LaForest

EpLink Management Committee:

  • Ali Khan, PhD
  • Amaya Singh, PhD
  • Danielle Andrade, MD
  • Elizabeth Donner, MD
  • Hamed Moazami, MSc
  • Jim Eubanks, PhD
  • Joanna Kapusta
  • Mary Lou Smith, PhD, CPsych
  • Mary Pat McAndrews, PhD, CPsych
  • McIntyre Burnham, PhD
  • Peter Carlen, MD
  • Rajesh RamachandranNair, MD
  • Sharon Whiting, MBBS