Burden, coping and needs in caregiving for someone with Parkinson’s: a pilot study

Goal: To identify the burden, coping strategies, and impact of caregiving for informal care partners for people with Parkinson’s disease.

We aim to recruit 15 informal (unpaid) care partners caring for people with Parkinson’s disease. Care partners will be eligible when identified as the primary care partner for a person with Parkinson’s disease. The diagnosis has to be confirmed by the treating neurologist as reported by the care partner. They have to be able to provide informed consent. Participants will be English speaking and over 18 years old.

Exclusion criteria: non-English speaking, paid/formal care partner, under 18 years old, and self-reported clinical cognitive impairment.

Please contact Rajasumi Rajalingam at Rajasumi.Rajalingam@uhnresearch.ca or Dr. Connie Marras at Connie.marras@utoronto.ca. to participate in this study.

 

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INVITATION TO PARTICIPATE IN A SURVEY ON PARKINSON’S DISEASE AND ACCESS TO HEALTHCARE SERVICES

We are currently conducting a study to better understand how people living with Parkinson’s disease access healthcare services across Canada and Europe.

In the context of this study, we are recruiting people living with Parkinson’s disease to participate. Your participation would consist of completing an on-line questionnaire which should take about 15 minutes. Participation is voluntary. The questionnaire is anonymous and all personal information will be kept confidential.

If you have been diagnosed with Parkinson’s disease and want to participate, or know someone who would like to participate, please click on the following link (ONLINE SURVEY) for more information about the study and to access the on-line questionnaire.

It is important that the questions are answered by those living with Parkinson’s disease. If needed, you can ask your caregiver, family member or friend for assistance.

For more information, please contact:

Dr. Tiago Mestre

Principal Investigator

University of Ottawa/ The Ottawa Hospital Research Institute

Phone: 613-798-5555 (x18986)

Email: tmestre@toh.ca

Dr. Eric Crighton

Co-Investigator

University of Ottawa

Phone: 613-562-5800 (x1065)

Email: eric.crighton@uottawa.ca


Candidats recherchés pour projet de recherche à U Laval. 2 questionnaires de 10 min à répondre à distance. Recherche personnes avec 1 ou + maladies chroniques. L’objectif du projet est de valider la version française du questionnaire.

 


 

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The Department of Human Health and Nutritional Sciences at the University of Guelph is seeking research participants 50-85 years of age with Parkinson’s disease to complete a 10 week exercise training study in collaboration with the Guelph YMCA. This study is funded by a 2018 Parkinson Canada Pilot Project Grant.

We are interested in comparing the ability of two different cycling programs on improving your balance, strength, mobility, and cardiorespiratory health.

To be included you must not have a history of dementia, stroke, diabetes, autonomic neuropathy, or recent smoking (< 6 months). You must be able to stand unsupported for 1 min, walk 18 m without use of an aid, and mount a stationary bike.

You would be asked to attend 2 pre-training and 2 post-training visits (~6.5 hrs) at the University of Guelph campus and complete 10 weeks of exercise training (3x/week; total ~30 hrs) at the Guelph YMCA.

We can discuss reimbursement for your transportation costs to the University. There is a small financial compensation available for this study.

If you are interested in participating or would like more information, please contact either:

Lori Ann Vallis, PhD (lvallis@uoguelph.ca) call (519) 824-4120 ext 54589

OR

Philip Millar, PhD (pmillar@uoguelph.ca) call (519) 824-4120 ext 54818

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Ambroxol as a novel disease modifying treatment for Parkinson’s disease dementia: a single-centre, randomized, double-blind, placebo-controlled trial

 Why is this study needed?

  • Current medications for the treatment of cognitive decline in Parkinson’s disease are helpful, but do not change the course of disease progression.
  • Cognitive decline is one of the main contributors to decreased quality of life , as well as increased risk of institutionalization and mortality among individuals with Parkinson’s disease.
  • The development of therapies that could delay memory loss in Parkinson’s disease is critical.

What is a clinical trial?

Clinical trial is a scientific investigation of a new therapy, such as new medication. Common questions addressed in clinical trials include:

  • Is the medication safe and well- tolerated?
  • Is the medication effective?
  • What is the best dose?

Participation in clinical trials contributes to the development of new treatments for debilitating medical conditions such as Parkinson’s disease.

 What is the Ambroxol Clinical Trial for Parkinson’s disease Dementia (PDD)?

The aim of this trial is to investigate the safety and tolerability of Ambroxol in individuals with PDD.

· Ambroxol is a cough medicine that has been available over the counter in more than 50 countries for over 30 years, but is not available in Canada or the USA.

· Ambroxol has an excellent safety record

· Ambroxol is thought to reduce the levels of a protein in the brain (i.e. alpha-synuclein) that is linked to the progression of Parkinson’s disease

What taking part in the Ambroxol clinical trial involve?

  • If you decide to participate in this research, you will be invited for a screening visit, when the research team will assess your eligibility for the study
  • If you are eligible for the study, you will be randomized into one of two groups: Ambroxol (1050mg) or placebo.
  • The study will last 1 year and involve 11 visits to Parkwood Institute (London, ON)
  • In these visits we will collect blood and urine samples to ensure safety. The study doctor will also exam you.
  • At the beginning (month 0), middle (month 6), and end (month 12) the research team will assess your memory, thinking, movements, daily functioning and behaviour.
  • An MRI will be done at the start and end of the study.

Can I participate in the Ambroxol clinical trial?

You may be eligible for the Ambroxol study if you:

  • 50 years old or older
  • If your Parkinson’s disease diagnosis preceded changes in memory and thinking by at least 1 year
  • If you have a caregiver who sees you at least 4 times a week and is willing to be your study partner
  • If you are taking appropriate medication for you Parkinson’s disease symptoms

Who can I contact about the study?

For more information about the Ambroxol clinical trial for Parkinson’s disease dementia contact the study coordinator:

Carolina Silveira

Phone: 519-646-6100 ext. 42367

Fax: 519-646-6226

Carolina.Silveira@sjhc.london.on.ca

End Date: 

 

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Getting Older Adults Outdoors (GO-OUT) Study

Are you an older adult who wants to improve your ability to walk outdoors?

What is the GO-OUT study? We are a group of students, physical therapists and researchers from universities in Montreal, Toronto, Winnipeg & Edmonton. We wish to evaluate two programs to help seniors to walk outside more easily.

Who are we looking for? We are looking for adults aged 65 years and older who are interested in walking outside for exercise during the summer.

What will you have to do? You will participate in four evaluations spread out over one year. After the first evaluation, we will use a process that is like flipping a coin to assign you to one of two programs. The programs are:

GO-OUT Workshop & Coaching Program: This program involves a workshop and weekly coaching. Participants will attend an interactive workshop to learn strategies and skills to walk safely outdoors. You will move between stations at which you will practice using a step counter and Nordic walking poles; learn about fall prevention, and footwear, and perform balance exercises. Lunch will be provided. After the workshop, a coach will call you weekly for 10 weeks to coach you to walk outdoors.

GO-OUT Workshop & Outdoor Walking Program: This program involves the same workshop as described above, but you will also participate in an outdoor walking group, led by a physiotherapist, for 10 weeks. In the outdoor walking program, you will meet as a group in a nearby park, twice a week, for 10 weeks.

When and where will the programs run? The GO-OUT workshop will take place in June 2019. The weekly coaching and outdoor walking group will run from June to August, 2019. These dates are tentative.  Please see below to get more information for your city.

Is there a cost to participate? No. The GO-OUT programs are FREE of charge as funding is provided through a grant. All participants will receive a free step counter and workshop workbook.

If you are interested in participating, please click below for details and contact information for your city:

Montreal – Project coordinator, email: outcomesrus@mcgill.ca, phone: (514) 934-1934 (ext 36902)

Toronto – Kyla Alsbury, email: GOOUTstudy@utoronto.ca, phone: (416) 946-7579

Winnipeg – Caryne Torkia, email: go.out@umanitoba.ca, phone: (204) 787-8015

Edmonton – Dr. Allyson Jones, email: GOOUT@ualberta.ca, phone: (780) 492-1610

 

 

End Date:  June 2020.

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Êtes-vous atteints de sclérose en plaques ou de la maladie de Parkinson?

Nouse recrutons présentement des homes et des femmes atteints de la maladie de Parkinson ou de la sclérose en plaques pur un projet de recherché sur l’impact des symptoms de ces maladies.

Si vous acceptez de participer, vous devrez seulement répondre à un questionnaire en ligne.

Cette etude aidera à sensibiliser les médecins face aux symptoms associés à la sclérose en plaques et à la maladie de Parkinson.

Les patients qui désirent participer peuvent consulter notre site web à l’addresse suivante:

https://minerbi.wixsite.com/neuro

English

Do you have multiple sclerosis or Parkinson’s disease?

We are recruiting women and men with Parkinson’s disease or Multiple Sclerosis for a novel research projet looking at the burden of symptoms in these diseases.

The study:

  • Only necessitates filling in an online questionnaire (5 minutes)
  • Will help raise awareness of physicians to symptoms accompanying Multiple Sclerosis and Parkinson’s disease.

Patients willing to participate are invited to visit our website at:

https://minerbi.wixsite.com/neuro

End Date:  Open

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July 2018

Research Participants Needed for Brain Imaging/Stimulation Study                                                                                                                                                                                                                                                                              

We are seeking subjects with Parkinson’s Disease to participate in our research study that involve brain imaging/stimulation to assess the effect tDCS and understand its underlying mechanism on cognitive dysfunction

Procedures:

Magnetic Resonance Imaging (MRI)

Transcranial Direct Current Stimulation (tDCS)

Motor & Neuropsychological exams

 

Location:

Deer Lodge Center/ Movement Disorder Clinic-  2109 Portage Ave, Winnipeg, MB R3J 0L3

Kleysen Institute for Advanced Medicine at HSC-  710 William Ave, Winnipeg, MB R3E OZ3

 

Contact:

Principle investigator: Dr. Ji Hyun Ko

Coordinator: Ms. Kelly Williams

Phone: 204-940-8427

Email: kwilliams3@mdc-dlc.ca

 

* If you don’t have Parkinson’s disease, and you would like to participate in our other brain imaging research trials, please contact our research coordinator (Dr. Abrar Alhindi, alhindia@myumanitoba.ca)

 


 

May 2018

 

You are invited to participate in a Focus Group Study titled “Parkinson Disease Care Partnerships:  Bridging Perspectives in Clinical Self-Management Interventions”

We are recruiting for 3 focus groups involving:

  1. People diagnosed with Parkinson’s disease (PD);
  2. Primary care partners/informal caregivers of those diagnosed with PD; and
  3. Healthcare professionals caring for those living with PD to participate in a research study investigating how self-management skills are taught in clinical settings and how healthcare professionals can meet the needs of care partnerships living with PD. The study will involve one focus group at a local community centre with 3-5 other participants of the same category. You will be asked questions about how important self-management skills are to you and how healthcare professionals meet these needs. The focus group will last 30-60 minutes.

In order to be eligible for this study, you must:

  1. Be one of the following:
    1. An individual diagnosed with Parkinson disease by a neurologist, OR
    2. The primary care partner for a person diagnosed with PD for at least one year, OR
    3. A healthcare professional who treats at least 6 people with PD per year (e.g., neurologist, physiotherapist, occupational therapist, nurse, etc.)
  2. Be able to communicate in English about your experiences associated with Parkinson disease. You must be able to recall and describe past experiences.
  3. Not have a neurological condition other than PD.

Please call/e-mail Danielle Hudson for more information if interested! Phone: 519-870-0672

E-mail: dbellbou@uwo.ca

Principal Investigator: Dr. Denise Connelly

dconnell@uwo.ca

519-661-2111 ext 82238