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ONDRI project management team changes

Alicia Peltsch_0.jpgDonna Kwan 2.jpgNow that we have completed our initial enrollment phase, the immediate human resource needs within ONDRI are evolving. Our exclusive focus for the past four years has been "getting data into Brain-CODE" and now our attention turns to "getting data out of Brain-CODE."

The project management team will focus on retention of participants to ensure maximum participation in annual follow up visits, and analysis of baseline data. To achieve the first goal, the Clinical Research Managers (CRM) and site research coordinators will continue on with their excellent work ensuring participants remain in the study. To achieve the second goal, human resources have been adjusted to facilitate data curation and analysis.

New ONDRI publication policy

We thank Drs. Michael Borrie, Doug Munoz, and Stephen Strothers for their time and effort on this committee, as they move on to many other roles within ONDRI. Also, Dr. Mario Masellis will now switch to an ex-officio role on this committee as our main liaison to the ONDRI Executive Committee.

Dr. Dar Dowlatshahi will be the new chair and we welcome Drs. Malcolm Binns, Ying Chen, and Carmela Tartaglia to our committee. We're also happy to announce that ONDRI officially appointed Dr. Alicia Peltsch to support and operationalize our committee.

A new publication policy was created to highlights the proposal submission and approval process.


Read the ONDRI Spring participant newsletter

2017 Spring ONDRI Newsletter for Participants Small.JPGRead the ONDRI newsletter specifically for ONDRI participants and their care partners. The goal of the newsletter is the update participants on ONDRI's progress.

Participants will receive a paper copy of the newsletter at the clinics when they have their follow up visits.

Highlights include closing enrollment, research findings, why ONDRI is unique, and Dr. Sean Symons.


Ontario achieves a fully-funded dementia strategy

2017 ontario budget.jpgOn April 27, 2017, Ontario Finance Minister, Charles Sousa, introduced the 2017 Ontario Budget, A Stronger, Healthier Ontario, which included a commitment to invest more than $100 million over three years toward the implementation of a dementia strategy in Ontario.

Learn more.


Survey: Develop a visual education tool to discuss Parkinson's

educate PD.JPGTo all people with Parkinson’s disease (PD), caregivers and family members of people with PD and health care professionals who care for people with Parkinson’s:

We invite you to participate in "Educate PD", an exciting new project designed to help us improve the way health care providers communicate with patients and caregivers about PD.


Meet: Donna Kwan, Clinical Platform Lead

Donna Kwan 2.jpgTell me about your research.

My personal research focuses on how memory disorders, strokes, or even normal aging may alter the way we experience time, respond to risk, and make financial decisions. Much of the work that I, my former advisor Shayna Rosenbaum, and my collaborators at Washington University, St. Louis have done in this area is summarized in an article entitled, “Individuals with amnesia are not stuck in time.”


ONDRI researchers in Krembil news

krembil magazine.JPGSeveral ONDRI investigators are featured in the Krembil Research Institute's, part of University Health Network, newsletter. Read about their research including:

  • Dr. Donald Weaver: "Alzheimer's drug could be on the horizon."
  • Dr. Anthony Lang: "Patients helping to hunt for biomarkers that could lead to early diagnosis and treatment of Parkinson's."

Video: What you need to know about Parkinson's

2017 02 Chris Hudson.JPGChris Hudson has Parkinson's disease. He's also a researcher at the University of Waterloo studying neurodegenerative disorders.

He wants you to hear his personal story and learn about misconceptions that around Parkinson's disease and what we can do to tackle them.

Watch the two minute video about Chris.


ONDRI enrollment is complete

On March 31, ONDRI stopped recruiting and enrolling participants in the study. Now that ONDRI has 500+ participants, researchers and clinicians will focus entirely on the follow up visits for existing participants and analyzing data.
Some researchers have already completed preliminary analysis and are discovering intriguing findings, such as dementia symptoms possibly being linked to how fast you walk and how you move your eyes.

ODAG speaks with United Nations about human rights

UN logo.jpgPeople with dementia from around the world are looking to the United Nations Human Rights Committee on the Rights of Persons with Disabilities (UN CRPD) to have their rights defined and upheld. Ontario Dementia Advisory Group (ODAG), a member of ONDRI's Patient and Community Advisory Committee, and Dementia Alliance International are leading the charge and part of a coalition that's helping to make this happen.

In mid-March, the UN CRPD held a meeting and ODAG's Vice-Chair, Phyllis Fehr, had the opportunity to attend and speak.

People with dementia and supporters are thrilled with this triumph. The ex-Deputy Chair of the CRPD Committee, Diane Kingston, calls it ‘unprecedented.’


Meet: Senny Chan, Research Coordinator

Senny Chan.jpgWhat’s your role with ONDRI?

I’m a research coordinator at Sunnybrook Health Sciences Centre. I mainly work on the front lines – screening, recruiting, scheduling, and testing participants. I also process, manage and upload data to electronic databases, including Brain-CODE.

Why did you choose your profession?

I started working in health care as a clinical psychometrist before moving on to a qualitative research setting. After graduating, it felt like clinical research combined the best of both worlds.


Investigators awarded part of $30 million in grants from Weston Brain Institute

weston brain institute logo.pngWeston Brain Institute announced the allocation of more than $30 million in funding for Canadian research projects that fight brain diseases of aging.

The grants were given to incredible scientists that are focusing on projects with the potential to make the greatest impact in neurodegenerative diseases of aging, an area that is significantly underfunded in Canada.

Congratulations to the ONDRI investigators that are awardees:


Video: Public talk about "Dementia Beyond Alzheimer's"

2017 02 OBI Public Talk.jpgWatch the video recording of the OBI and ONDRI Public Talk about "Dementia Beyond Alzheimer's" featuring Drs. Elizabeth Finger, Mandar Jog, and J.B. Orange.

The focus of the discussion was that other neurodegenerative disorders like Parkinson's disease and ALS can also lead to dementia and other cognitive impairments. They walked about how they are re-examining how we speak, think, and move so we can understand, and eventually treat, dementia better.


Meet: Kelly Sunderland, Research Biostatistician

Kelly Sunderland.jpgWhy is working with ONDRI important to you?

ONDRI is a really interesting since it combines many different angles of measuring the five diseases, and integration at the data level will hopefully allow for more direct links between the different angles. It also makes my role as a biostatistician more intriguing since I'm able to learn and play with so many different types of data.

On a more personal level, my grandmother suffered a stroke 10 years ago, and as a result I’ve been finding the discussions surrounding stroke very educational. It’s exciting to be learning about this disease that’s so prevalent within my own family, and knowing that little by little what I’m doing will have an impact.


April is Parkinson's Awareness Month

April is Parkinson's Awareness Month

Learn how you can help spread the word: Parkinson Canada and Twitter.

2016 04 David Grimes parkinson month.JPG  2016 04 Anthony Lang parkinson month.JPG  2016 04 Chris Hudson parkinson month.JPG