Patient Resources

What is clinical research

Clinical research is the scientific investigation that directly involves patient care and human subjects with the goal to improve health care by establishing a treatment or diagnosis of a disease. Clinical research aims to answer why the disease occurs and how the disease develops. This will help researchers get to the bottom of developing therapeutic targets to stop disease progression and not just simply treating symptoms.

How is clinical research different from clinical trials

As opposed to clinical trials, which involve testing the efficacy of drugs through various testing phases, clinical research uses basic lab techniques and established treatments in hopes of finding novel therapeutic targets to improve upon existing treatments to benefit patients.

How does clinical research benefit me and my family?

You will receive no direct clinical benefit from participating in the study. Although there is no immediate benefit to you or your family, the knowledge gained from participation may lead to an earlier diagnosis as well as novel treatments, which are designed to help with symptoms by slowing disease progression.

Why do you want my family members to participate?

If you have a family history of Parkinsonism or related movement disorder, you are more likely to have a genetic predisposition. Therefore, analyzing DNA blood samples from other family members (including unaffected spouses) is extremely important in determining novel genes in disease.

Will I be compensated for participating in clinical research?

You will not receive any monetary compensation or reimbursement for your participation in the study. However, the genetic analysis of the blood samples will be done at no charge to you. You will also have contributed to a greater understanding of neurodegenerative diseases.

Will I have to travel to the research site to participate? (It’s not easy for me to get out to UBC, can I still participate?)

We facilitate participation for those interested regardless of location. For those who are patients of the Movement Disorders clinic at UBC or who can conveniently come to the UBC hospital, we can conduct the blood draw directly at the clinic.

For those living outside of the Vancouver area, we can also send out sample kits. These kits contain consent forms, a lab requisition form, and shipping materials. All that we kindly ask you to do is to visit a local lab (Life Labs or BC Biomedical Laboratories) at your most convenient location to do the blood draw. The lab will bill us directly for all costs associated with the blood draw as well as shipping.

How much time will it take to participate in clinical research studies?

Generally, only a one-time blood draw and answering a short questionnaire is required. The blood draw can be done at the Movement Disorders Clinic at UBC or at a local lab at your convenience. Additionally, the questionnaire can be done in person or over the telephone and should take about 10 to 30 minutes.

Will I be notified of research progress or when the study is completed?

Notification may be sought. Participants may additionally consent to banking their DNA for use in future genetic research studies into neurodegenerative diseases. The blood drawn for use in the main study will also be used for extracting the DNA that will be stored for use in future research. Alternatively, specific studies on these samples may be abandoned, but data will be kept for 5 years after publication. The biospecimens and data have been provided for genetic research, for clinical, pathologic and genetic correlations, to try and identify the molecular basis of Parkinson Syndrome and related neurodegenerative disorders. The biospecimens may be destroyed or returned to collaborating Institutions, at their request and at any time. Similarly, individuals have the rights to withdraw their participation. The specific collaborating Institution only needs to notify Dr. Farrer (or the database administrator) to remove a record/sample.

Will I be contacted about additional clinical research studies?

Yes, you may be contacted about additional studies in the future. If you would prefer not to be contacted, simply let us know and you will not be informed of future clinical research studies.

How do I get involved in research?

You or a family member might have been informed about this research by one of your relatives who attends this Clinic for medical care. However, we are not ethically allowed to directly contact interested participants until they contact us. Once you contact us, a Study Coordinator or one of the Investigators will contact you for more information. You can then decide if you want to participate or not.

Are there any requirements to be involved in clinical research?

People with Parkinsonism, dystonia (a syndrome of sustained muscle contractures causing twisting and repetitive movements), dementia, or related disorders may participate. Unaffected family members including spouses, siblings, parents, and relatives are also encouraged to participate. We are particularly interested if there is a family history of any of these conditions.

How is my privacy protected in the clinical research study?

All personal health information will be kept confidential. Clinical information and biological samples used for research will be coded with a de-identified number.

Can I withdraw from the study at any time?

If you decided to withdraw from the study at any time, even at some later time after consenting to the study, your request will be respected and the data generated from your sample will be destroyed. We will also notify collaborating Centre(s) that were sent your de-identified information and bar-coded sample and request that all records and materials are destroyed. You should address your request to the Principal Investigator or one of the co-investigators. We remain grateful for your participation and your request will be honored.

Will participation affect my health insurance?

Your participation will not affect any past or future health insurance policy. Our study is for genetic research and is not associated with assessing genetic risk. However, if genetic test results are separately requested, you may then be compelled to disclose this information to insurance companies for any future coverage applications.

Are there any hidden costs for participating in clinical research?

Study procedures will be done at no cost to you. All expenses pertaining to getting your blood drawn and all shipping fees for the sample blood kit will be billed directly to us.

Will I know my results after the genetic analysis? (I would like to see my results, is that possible?)

Individual genetic results are rarely made available as part of the research. Only under the circumstances in which a high risk, penetrant genetic mutation related to Parkinson’s disease is identified in your sample, you would be offered the right to know. However, this will be approached with appropriate counselling and only at your request. Genetic testing would be made available to confirm research results and made available to you by your neurologist with the proper explanation and counselling. Genetic counselling would also be made available to you and your family members. For this process, your informed consent and a new blood sample would be required.

No information that discloses your identity will be released or published. However, findings in total may be published in medical literature and lay press in an anonymous manner.

Are there any risks or inconveniences in participating in clinical research?

We do not anticipate any serious complications from having your blood taken. Infrequently, subjects will experience pain, bleeding, swelling, infection or bruising at the needle puncture site. Very rarely, a subject will feel light headed and may even faint when having blood drawn.

Who is funding the clinical research?

For the work required in doing this clinical research, the Principal Investigator (Dr. Matthew Farrer, Director for the Centre for Applied Neurogenetics) has received financial compensation from the sponsors: Canada Excellence Research Chairs, Canadian Institutes of Health Research.

Will my children get Parkinson’s if it’s genetic?

By discovering the genes that are linked to Parkinson’s and related conditions, scientists have a clue into what is causing the condition. Some of these genes may be associated with PD or may have mutations causing the condition. Researchers have studied these genes within families and have found family members with the same gene mutation may or may not develop symptoms at different ages.

Can my family members also participate?

Yes, if you have a family history of PD, we invite your unaffected and affected family members including spouses, siblings, parents, children, and cousins to participate.

I have no family history of Parkinson’s disease, is my sample still helpful?

Yes! Clinically, individuals having Parkinson’s disease who also have a family history can be indistinguishable from those without a family history. It is widely accepted that Parkinson’s disease is a multi-factorial condition that takes into play many different aspects. Some of these genetic factors are specific to certain families or are found in certain populations. Even if an individual does not have a family history of Parkinson’s disease does not mean that they do not carry some genetic susceptibility factor common to a specific type of population (e.g. ethnic group). If a novel gene/genetic mutation is found, all samples are used to establish the validity of the mutation in relation to increasing susceptibility to Parkinson’s. There is strength in numbers and each contribution that is made is incredibly appreciated!

I’ve had significant chemical exposure in the past, so does that mean my Parkinson’s wasn’t genetically caused?

Exposure to certain pesticides (rotenone and permethrin) and chemicals such as trichloroethylene (TCE) and PERC (chemicals used in dry cleaning) may increase your risk of developing Parkinson’s disease may prove that environmental factors play a certain role, however, given that the general population is exposed to these chemicals throughout their lives may infer there may be a combination of factors such as a person’s genetic makeup that make them susceptible to the effects of chemicals.