Studies seeking participants

Are you or someone you know living with a neurological condition?

The LINC Study is a national study to learn about Canadians living with a neurological condition and the impact on their everyday lives.

The study has 3 parts:

  • a snapshot in time: an in-depth survey of 3500 people living in Canada
  • a year in the life of 350 Canadians: a series of monthly conversations
  • individual stories: a study of 18 people, their families and supporters

Participants must live in Canada and be:

  • 17 or older and living with a neurological condition OR
  • a parent of a child (5-16 years) with a neurological condition

LINC is being conducted by a team of researchers from Dalhousie University, Queen’s University, the University of Manitoba, Memorial University and the University of Prince Edward Island, as part of the National Population Health Study of Neurological Conditions.

For more information, please e-mail thelincstudy@dal.ca or call (902) 494-1699 or 1-855-462-6828 (toll-free).

Are there multiple incidences of Parkinson’s disease in your family?

Approximately 14% of people with Parkinson’s disease have a family history of the condition, with one or more of their relatives also being affected. In multi-incident families – those with two or more affected family members – Parkinson’s appears more commonly than in the general population. This higher frequency of disease may be due to a shared genetic susceptibility among blood-relatives.

At the Centre for Applied Neurogenetics (CAN) located at the University of British Columbia, researchers are working, together with an international network of neurologists and researchers, to characterize the Parkinson’s Genome, focusing on family genetics and population genetics. They are applying the latest technologies in human genetics to find the specific gene(s) responsible for Parkinson’s disease.

The success of this research hinges on acquiring enough samples from families where multiple people have been diagnosed with Parkinson’s disease or a related form of neurodegeneration, such as forms of Parkinsonism, Progressive Supranuclear Palsy, Corticobasal Ganglionic Degeneration CBD, and Dementia with Lewy Bodies.

If you and your family are interested in being involved in this research, you will be asked for some clinical information on diagnoses and a small blood sample (2 teaspoons) for genetic analysis. All data are de-identified to ensure participant confidentiality.

For more information, please e-mail about@can.ubc.ca. You are also invited to visit the website, http://www.can.ubc.ca/.

Sinemet: brand/generic cost difference covered by Merck

If you have been prescribed Sinemet or Sinemet CR, please note that on November 7, 2011, Merck Canada Inc., the manufacturer of Sinemet, launched a program that will pay the difference in cost between the generic and brand-name product.

To participate, request a Sinemet Patient Assistance Program card from either your neurologist (who can get a supply of cards for patients) or directly from Merck. Then, present the card to the pharmacist when you are seeking a refill or requesting a new prescription for Sinemet or Sinemet CR. Request “no substitution.”

The pharmacist will fill the prescription with the brand product but bill you the cost of the generic. Merck will pay the pharmacy the difference in cost. You should retain the card and use it as long as your prescription continues.

For more information about the Sinemet Patient Assistance Program, see the letter from Merck Canada or contact your regional Parkinson Society.