CHOICE-D Survey

Led By University of Cambridge

Choices shaping dementia trial participation

CHOICE-D Survey

Step 1 of 50

Consent(Required)

You must be over 18 to take part in this survey.

All the information you provide will be kept strictly confidential and used for research purposes only. Your responses will be anonymised and stored securely, in accordance with data protection regulations. No personally identifiable information will be shared or published.

Data from this survey will:

• Be entirely anonymous. We won't collect any information which might identify you.

• Be stored securely on University of Cambridge servers. It may be shared with other people who are interested in this research

Please note that the explanations here do not replace seeking medical advice from a qualified professional.

By clicking “I Agree” below, you give informed consent to participate in this survey. You acknowledge that you have read and understood the information provided about the survey's purpose, and the confidentiality of your responses.

Your participation is invaluable - thank you for contributing to this important research!

General information about how the University uses personal data can be found here https://www.information-compliance.admin.cam.ac.uk/data-protection/research-participant-data

This research has received ethical review from the University of Cambridge Human Biology Research Ethics Committee

I Agree

Demographic Information

How old are you?(Required)

18-24

25-34

35-44

45-54

55-64

65-74

75-84

85 and over

What is your gender?(Required)

Female

Male

Non-binary

Prefer to self-describe

Prefer not to say

What is the highest degree or level of school you have completed?(Required)

Secondary school (e.g., GCSE's, O-levels)

Further education (e.g., A-levels, sixth form, college diploma)

Bachelor's degree

Postgraduate degree

How would you describe your ethnicity?(Required)

English/Welsh/Scottish/Northern Irish/British

Irish

Gypsy or Irish Traveller

Other White background

White and Black Caribbean

White and Black African

White and Asian

Other Mixed/Multiple ethnic background

Indian

Pakistani

Bangladeshi

Chinese

Other Asian background

African

Caribbean

Other Black / African / Caribbean background

Arab

Other ethnic group

Other ethnic groups(Required)

Please specify

Which country do you currently live in?(Required)

Which of the following best describes you?(Required)

(You can tick more than one category)

I have dementia or other memory problems (for example mild cognitive impairment).

I am completing this survey on behalf of someone with dementia or other memory problems.

I care/have cared for someone with dementia.

My friend or family member had/has dementia.

My work is related to dementia.

I am interested in addressing the challenges of dementia.

None of the above.

Prefer not to say.

What do you think is your risk of developing dementia is in the future?(Required)

Very low	Low	Neither low nor high	High	Very high

Section 2: Research Participation and Trial Procedures

In this section, we will ask you some questions about any previous research you may have taken part in.

We will also ask you what may influence or deter you from taking part in research in the future.

Research Participation and Trial Procedures

Have you ever taken part in a clinical trial for any condition other than dementia?(Required)

Yes

Prefer not to say

Have you ever taken part in a drug trial for dementia?(Required)

Yes

Prefer not to say

Would you consider taking part in another drug trial for dementia in the future?(Required)

Yes

Prefer not to say

Would you consider taking part in a drug trial for dementia in the future?(Required)

Yes

Prefer not to say

Have you ever taken part in a research study on dementia that did not involve testing a drug?(Required)

Yes

Prefer not to say

Which type(s) of dementia research studies have you taken part in?(Required)

(Please tick all that apply)

Questionnaires or surveys - Written forms where you answer questions about your health, lifestyle, or experiences.

Interviews - One-on-one or small-group conversations where a researcher asks you questions in more depth.

Brain imaging studies - Tests such as MRI or CT scans that take pictures of the brain to understand its structure or activity.

Tasks or activities that measure thinking skills, memory, attention, decision-making, or everyday behaviours.

Biological samples (e.g., blood, saliva, or sometimes urine) used to study genes, proteins, or other markers related to health.

Long-term studies where researchers check in with participants regularly to track changes in health or behaviour.

Other - Any additional types of research participation not listed above.

Would you consider taking part in another research study on dementia that DOES NOT involve testing a drug or medication in the future?(Required)

Yes

Prefer not to say

Would you consider taking part in a research study on dementia that DOES NOT involve testing a drug or medication in the future?(Required)

Yes

Prefer not to say

How important are the following factors which might influence your decision to participate in a dementia clinical trial?

Q11a

(Please drag and drop to rank the most important at the top)

How important are the following factors which might deter you from taking part in a dementia clinical trial?

(Please drag and drop to rank the most important at the top)

Q11.2

Section 3: Trial Procedures

In this section, we will ask you some questions about common trial procedures in dementia research.

Brain Scan

In dementia research studies, a brain scan may be carried out during the screening stage to check whether someone is suitable to participate. It can also be used during the study itself to monitor how a trial treatment is affecting the brain over time.

There are different types of brain scans used. During a brain scan, you lie still while a machine takes detailed pictures of the brain. These images help researchers look at the structure and activity of the brain.

You can find out more information on brain scans here .

Have you ever had a brain scan?(Required)

Yes

Prefer not to say

Would you take part in a clinical trial if it involved a brain scan?(Required)

Yes

Prefer not to say

How many brain scans might you be willing to have in a 12-month period as part of a clinical trial?(Required)

Lumbar Puncture

In dementia research studies, a lumbar puncture may be carried out during the screening stage to check whether someone is suitable to take part. It can also be used during the study itself to monitor how a trial medication is affecting the body.

During a lumbar puncture, a doctor inserts a thin needle into the lower back, between the bones of the spine, to collect a small sample of spinal fluid for testing.

You can find out more information on lumbar punctures here .

Have you ever had a lumbar puncture?(Required)

Yes

Prefer not to say

Would you take part in a clinical trial if it involved a lumbar puncture?(Required)

Yes

Prefer not to say

How many lumbar punctures might you be willing to have in a 12-month period as part of a clinical trial?(Required)

Genetic Testing

In dementia research studies, genetic testing may be carried out to understand how certain genes might influence the way dementia develops and how they interact with other factors.

It usually involves giving a small sample of blood, saliva, or a cheek swab, which is then analysed in a laboratory. Researchers look for specific genetic markers that can provide useful information.

You can find out more information on genetic testing here .

Have you had a genetic testing before?(Required)

Yes

Prefer not to say

Would you participate in a clinical trial if it involved genetic testing?(Required)

Yes

Prefer not to say

Study Partners

A study partner is someone who supports a participant throughout a dementia research study, usually the primary caregiver, but may be a close family member or friend.

Their role can include helping with appointments, providing information about day-to-day changes, and offering general support during the study. Having a study partner helps researchers understand how the participant is doing over time.

You can find out more information on study partners here .

If the clinical trial required a study partner, woud you be comfortable having one involved?(Required)

Yes

Prefer not to say

Study Communications

How would you prefer to communicate with the research team while taking part in a study?

(Please drag and drop to rank the most preferred at the top)

Section 4: Clinical Trial Participation Preferences

As dementia clinical trial designs are developed, it is important to understand which features potential participants value most.

In the following six questions, you will see some imaginary clinical-trial options. Please imagine that you need to decide whether you would take part in a trial like this and choose which option you would prefer.

Each clinical trial option may be different in the following ways: