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Registration - UBCH-CARD Registry

TITLE: UBC Hospital Clinic for Alzheimer and Related Disorders (UBCH-CARD) Registry Database for Future Clinical Studies

PRINCIPAL INVESTIGATOR: Dr. Robin Hsiung, MD MHSc FRCPC FACP FAAN

Ralph Fisher & Alzheimer Society of BC Professor

Division of Neurology, Dept. of Medicine

University of British Columbia

Email: robin.hsiung@ubc.ca

Phone: (604) 822-3610

SUMMARY:

The purpose of this initiative is to create a registry of people who are interested in participating in currently enrolling or future studies. This regsitry also aims to determine whether you may be a possible candidate for one of the research studies currently enrolling at the University of British Columbia Hospital (UBCH) Clinic for Alzheimer and Related Disorders and related clinics.

Our research group is often approached by members of the public who would like to participate in research focusing on dementia. Sometimes we do not currently have any studies enrolling that would be suitable for that person; however, in the future there may be studies that would be appropriate for them. By creating a research registry we can re-contact people who have expressed an interest in participating in research.

Many of our studies also have entry criteria based on the questions included below. It is helpful to be able to determine whether a potential participant may be eligible based on that entry criteria, before they take part in a full screen for the study.

WHAT ARE THE POSSIBLE RISKS AND/OR BENEFITS?

Participation in this registry involves the potential risk of breach of confidentiality of your data that is stored in the database. Your data will be assigned a unique number and all personal identifiers will be removed whenever the data is downloaded to reduce this risk.

There are no direct benefits to you from participating in this registry. However, by registering, you may be informed of possible studies to participate in that you would not have otherwise have learned about.

HOW WILL MY TAKING PART IN THIS REGISTRY BE KEPT CONFIDENTIAL?

Your confidentiality will be respected. However, research records and health or other source records identifying you may be inspected in the presence of the Investigator or designate and by representatives of UBC's Clinical Research Ethics Board for the purpose of monitoring the research. No information or records that disclose your identity will be published without your consent, nor will any information or records that disclose your identity be removed or released without your consent unless required by law.

You will be assigned a unique number as a participant in this registry. This number will not include any personal information that could identify you (e.g., it will not include your Personal Health Number, SIN, or your initials, etc.). Only this number will be used on any research-related information collected about you during the course of this registry, so that your identity will be kept confidential. Information that contains your identity will remain only with the Principal Investigator and/or designate. The list that matches your name to the unique number that is used on your research-related information will not be removed or released without your consent unless required by law.

Your rights to privacy are legally protected by federal and provincial laws that require safeguards to ensure that your privacy is respected. You also have the legal right of access to the information about you that has been provided to CREB. if need be, an opportunity to correct any errors in this information. Further details about these laws are available on request to the research team.

WHAT HAPPENS IF I DECIDE TO WITHDRAW MY CONSENT TO PARTICIPATE?

You may withdraw from this registry at any time without giving reasons. If you choose to enter the registry and then decide to withdraw at a later time, you have the right to request the withdrawal of your information collected. If you would like to request the withdrawal of your data, please let the principal investigator of the registry know.

YOUR PARTICIPATION IS VOLUNTARY:

Your participation is voluntary. You have the right to refuse to participate in this registry. If you decide to participate, you may still choose to withdraw from the registry at any time without any negative consequences to the medical care, education, or other services to which you are entitled or are presently receiving.

Please review the the information provided here carefully when deciding whether or not you wish to be part of the research and agree only if you accept being a registry participant.

WHO DO I CONTACT IF I HAVE ANY QUESTIONS OR CONCERNS ABOUT MY RIGHTS AS A PARTICIPANT?

If you have any concerns or complaints about your rights as a research participant and/or your experiences while participating in this registry, contact the Research Participant Complaint Line in the UBC Office of Research Ethics at 604-822-8598 or if long distance e-mail RSIL@ors.ubc.ca or call toll free 1-877-822-8598. "Please reference the study number [H25-00399] when calling so the Complaint Line staff can better assist you.

By completing the questionnaire, you are consenting to participate in this research registry.

Thank you for your interest in participating in our Registry for the UBC Hospital Clinic for Alzheimer Disease and Related Disorders. This registry is for clinic patients and members of the public who are interested in participating in dementia related research at our clinic.

Please note that not all questions below pertain to all studies conducted at the clinic. This questionnaire is meant to include basic criteria for many different types of studies we conduct. We encourage you to fill out the form below as completely as possible in order for us to determine if there are any current studies that you may be an eligible candidate for; however, there are certain questions you can skip if you don't feel they apply to your situation or level of interest, or if you prefer not to answer them.

If, upon review, it looks like you may meet the initial criteria for a research study, you will be contacted by a study coordinator from our clinic for follow-up.

If you do not meet initial criteria for any current research study, we will retain your information and re-visit submissions periodically to review whether you meet criteria for any new studies that open in the future.

Information you provide will only be accessible to research staff on the UBCH-CARD Registry study, led by Dr. Robin Hsiung.

If you experience any technical difficulties, please contact: card.clinic@ubc.ca

Today's date

* must provide value

Y-M-D

First name

* must provide value

Last name

* must provide value

What pronouns do you use?

* must provide value

She/Her

He/Him

They/Them

Other

Prefer not to answer

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Email address

* must provide value

Phone number (optional)

What are the first 3 characters of your postal code?

* must provide value

What year were you born? (format YYYY)

* must provide value

What month were you born?

* must provide value

Please indicate your highest level of education.

* must provide value

Fewer than 12 years of formal education

High school

Undergraduate degree (bachelor's, associate)

Graduate degree (master's, doctorate, professional degrees)

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Do you feel comfortable communicating in English?

* must provide value

Yes

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Please indicate the language you are most comfortable:

Do you have any visual or hearing difficulties/impairments that may affect your ability to participate in a study?

* must provide value

Yes

Prefer not to answer

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Do you have any concerns about your memory?

* must provide value

Yes

Prefer not to answer

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Have you been diagnosed with cognitive impairment or dementia?

* must provide value

Yes

Not sure

Prefer not to answer

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Have you been diagnosed with any of the following?

* must provide value

Mild Cognitive Impairment (MCI)

Alzheimer Disease (AD)

Vascular Dementia

Frontotemporal Dementia (FTD)

Dementia with Lewy Bodies

Mixed Dementia

Other

Not sure

Prefer not to answer

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Other (please describe)

* must provide value

What was the approximate date of your diagnosis?
This is to help determine what studies you may be eligible for.

* must provide value

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Do you have a first degree family history of dementia or a neurodegenerative condition?
(a first degree relative includes parents, siblings, or children).

* must provide value

Yes

Not sure

Prefer not to answer

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If you feel comfortable providing further information about any family history of dementia or neurodegenerative disease, please add more details here, otherwise feel free to leave it blank.

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Please list any medical conditions you currently have.
(If you prefer not to answer this question, please leave it blank)

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Are you willing and able to have an MRI scan?

Some reasons that you might not be able to have an MRI are:
-pacemaker
-aneurysm clips/wires
-cochlear implant
-severe claustrophobia

* must provide value

Yes

Not sure

Prefer not to answer

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What medications are you currently taking?
(If you prefer not to answer this question, please leave it blank)

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Do you have any allergies?

* must provide value

Yes

Not sure

Prefer not to answer

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Please list any allergies you have.

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Are you a patient of the UBC Hospital Clinic for Alzheimer Disease and Related Disorders?

* must provide value

Yes

Prefer not to answer

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Did a doctor or staff member at the UBC Hospital Clinic for Alzheimer Disease and Related Disorders mention a particular study that you may be eligible for?

* must provide value

Yes

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Please let us know the name of the study mentioned by your doctor/clinic staff. The name of the study should be noted on the card you received from your doctor/clinic staff about the registry.

Who were you referred by?

Are you interested in a particular study? If so, what is the name of the study?

What type of stud(ies) are you interested in? (please select all that apply)

* must provide value

No preference

Interventional studies - drug therapies

Interventional studies - other (these may include lifestyle interventions such as diet, exercise, education, etc.)

Observational studies - no intervention

Are you willing to receive emails periodically about UBC studies related to dementia which are being carried out by investigators outside of the UBC Hospital Clinic for Alzheimer Disease and Related Disorders?

* must provide value

Yes

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How did you find out about this registry?

* must provide value

I learned about it through the UBC Hospital Clinic for Alzheimer Disease and Related Disorders

I learned about it through word of mouth

I learned about it through an internet search

I learned about it another way

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Other - How did you learn about this registry?

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Please add any comments or notes you would like us to be aware of.

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I agree to the submission of my information provided above to Dr. Robin Hsiung and his UBC research staff, and I agree to be contacted about current or future studies related to dementia that I may qualify for.

*You will receive an email confirming your registration and information on how to opt out in the future after submitting this form.

* must provide value

I agree

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