- What is Parkinson’s?
- Why is the Predict Parkinson’s study important?
- If I have trouble smelling, does that mean I have or will develop Parkinson’s?
- Who can participate in the Predict Parkinson’s study?
- How long will I be participating in the Predict Parkinson’s study?
- How large is this study?
- Can I be taken out of the study without my consent?
- Will I be paid to participate in the study?
- What if I want to quit the study?
- What if I have a question or problem?
1. What is Parkinson’s?
Parkinson’s is a disorder of movement that is progressive. Its symptoms are muscle rigidity, tremor, slowness of movement and problems with balance.
Parkinson’s results from the loss of specific nerve cells in the brain. These brain cells that are lost are those that use dopamine as their chemical signal. This region is very important for movement and thinking. The discovery of dopamine deficiency in Parkinson’s and the introduction of L-dopa (a chemical that turns into dopamine in the brain) have revolutionized the treatment of this disease. Parkinson’s afflicts 8,400 people in the Maritimes and impacts the lives of many more of their families and friends.
2. Why is the Predict Parkinson’s study important?
The development of new, improved methods for early diagnosis of Parkinson’s is vital to allow further advances in drug and/or surgical treatments for this disease. Predict Parkinson’s will study the sense of smell as a possible way to Predict Parkinson’s earlier.
Impairment in olfactory function (sense of smell) is an early manifestation of both Parkinson’s and Alzheimer’s. A loss of smell often comes long before motor symptoms in Parkinson’s begin. A significant part of the Predict Parkinson’s study looks at first-degree relatives (siblings, parents, children) of those who have already been diagnosed with Parkinson’s. First-degree relatives who may not show any other symptoms but have deficits in their sense of smell may be at a higher risk to develop Parkinson’s. The Predict Parkinson’s pilot study uses a combination of the University of Pennsylvania Smell Identification Test (UPSIT), diffusion-weighted magnetic resonance imaging (DW-MRI), diffusion-tensor imaging (DTI-MRI) and/or cognitive tests. The ultimate goal is to determine whether a simple, inexpensive screening test (the UPSIT), in conjunction with non-invasive DTI-MRI and cognitive tests, can identify a biomarker that will aid in the early diagnosis and treatment of Parkinson’s. While there are currently no therapies for preclinical Parkinson’s, many therapies are being studied. The development of these therapies depends upon the emergence of new and improved techniques for diagnosis. We hope this study with help us Predict Parkinson’s earlier or better.
3. If I have trouble smelling, does that mean I have or will develop Parkinson’s?
No. Many things can affect the sense of smell. The Predict Parkinson’s study looks at impaired sense of smell in combination with other Parkinson’s factors as a possible way to Predict Parkinson’s earlier and/or better.
The greatest risk of developing Parkinson’s is simply getting older. Other factors – such as family history, changes in sense of smell, changes in brain stricture – may increase the risk of Parkinson’s as well as other neurological conditions. Predict Parkinson’s examines some of these factors.
4. Who can participate in the Predict Parkinson’s study?
Five groups are being recruited for this study:
- Adults aged 45-70 who are physically and mentally healthy
- Adults aged 45-70 who have been diagnosed with Parkinson’s
- Adults aged 45-75 who have been diagnosed with Alzheimer’s
- Adults aged 45-70 who have been diagnosed with REM Behavior Disorder
- Adults between the ages of 40 and 65 who have a relative who has been diagnosed with Parkinson’s
If you belong to one of these groups, please visit our Sign Up section!
5. How long will I be participating in the Predict Parkinson’s study?
- If you are healthy, or have Parkinson’s, Alzheimer’s or REM-BD, you will be in the study for approximately one week. There are two visits over the course of the week: the first will last approximately 45 minutes; the second will last about 2 hours. During the seven days between the first and second visits, you will be asked to take 2 minutes every morning to fill out a sleep diary.
- If you are a first-degree relative of a person with Parkinson’s, you will be mailed a smell test that will take approximately 30 minutes to complete. Based on your scores on this test, you might be asked to come in to the QEII Health Sciences Centre in Halifax to take an MRI, which lasts about 2 hours.
6. How large is this study?
The Predict Parkinson’s study is being offered through Capital Health at the IWK Children’s Hospital.
Here is a breakdown of the numbers of people being recruited in the Maritime Provinces for the study:
- 45 patients with Parkinson’s
- 45 patients with suspected early-stage dementia of the Alzheimer’s type
- 45 patients with REM-BD
- 45 neurologically healthy control subjects
- 1200 first-degree relatives (sibling, parent, child) of people with Parkinson’s
7. Can I be taken out of the study without my consent?
Yes, you may be taken out of the Predict Parkinson’s study at any time, if
- There is new information that shows that being in this study is not in your best interests.
- The study sponsors (Canadian Institutes of Health Research, Parkinson’s Society of Canada, Dalhousie University Department of Psychiatry Research Fund), the Capital Health Research Ethics Board or the principal investigators decide to stop the study.
- You do not follow the directions of the Principal Investigator.
8. Will I be paid to participate in the study?
You will not be paid to be in the Predict Parkinson’s study. You will be given a small honorarium to cover any costs that you might incur while participating in the study (e.g., meals and parking).
9. What if I want to quit the study?
If you chose to participate in the Predict Parkinson’s study and later change your mind, you can say no and stop the research at any time. If you wish to withdraw your consent, please inform the Principal Investigator or a member of the Research Team. All data collected up to the date you withdraw your consent will remain in the study records to be included in study-related analyses.
10. What if I have a questions or problems?
For further information about the study, please contact us via e-mail at firstname.lastname@example.org or call 902-473-3147.