Appraisals of Study-Partner Questionnaires in Asymptomatic FTD Research

Study title: Appraisals of study partners in asymptomatic FTD research
Principal investigator: Daniel Brickman, PhD
IRB protocol number: NB600450
Funding source: This study received no funding
Consent version / date: 1.0 / August 19, 2026


Key information
We are asking you to take part in a research study. Participation is voluntary. This section summarizes the study; the rest of the document gives more detail. There are no right or wrong answers.

- Purpose. To learn how adults who are at genetic risk for frontotemporal dementia (FTD) view the use of study partners (also called informants) and the way study-partner procedures are described in long-term research.

- What you would do. Complete an online survey. It takes about 15-20 minutes.

- Voluntary. You can skip any question after eligibility and stop at any time. Your decision will not affect your care, your standing in any patient or advocacy community, or your eligibility for any other study.

- Main risk. Some questions address personal topics related to genetic risk, research participation, and people close to you, and may feel personal or uncomfortable. There is a low risk to your privacy.

- Benefit. You are not expected to benefit directly. Your answers may help researchers design future studies in a way that better reflects participants' priorities.

- Compensation. There is no compensation for taking part.

- Cost. There is no cost to you other than your time.

Who can take part
You may take part if you are 18 years of age or older, currently live in the United States or Canada, consider yourself to be at increased genetic risk for FTD because of your family history, a genetic test result, or both, do not currently consider yourself to have FTD, ALS, or another related neurodegenerative disease, and can identify an adult you would consider choosing as a study partner. This includes, but is not limited to, people with risk associated with C9orf72 (sometimes called C9), TARDBP, or any other gene associated with increased risk of both ALS and FTD. A few short eligibility questions at the start of the survey confirm this.

Why is this study being done?
Long-term research involving people at genetic risk for FTD often relies on a study partner - a person close to the participant who answers researchers' questions about the participant. Little is known about how people at genetic risk view these procedures and materials. This study asks for participants' perspectives to help researchers design and explain study-partner procedures.

What will happen if you take part?
You will complete an online survey of about 15-20 minutes. The survey asks you to:

- imagine a hypothetical long-term study that uses a study partner, and keep one person in mind as the study partner you would choose;

- react to adapted examples of study-partner questions and consent language;

- answer questions about your views of study-partner procedures and research materials;

- indicate what information you think would be useful when deciding about research participation;

- answer optional questions about yourself (for example, age range, gender, the basis of your genetic risk, and, if known, the gene involved).

The examples in the survey are research materials adapted from existing instruments. They are not statements or predictions about you. After the eligibility section, you may skip any question you prefer not to answer, and you may close the survey at any point.

What are the risks or discomforts?
- Emotional discomfort. Some questions address personal topics related to genetic risk for FTD, research participation, possible symptoms, and people close to you. These topics can feel personal or upsetting. After the eligibility section, you may skip any question and stop at any time.

- Privacy. There is a low risk that information could be seen by someone outside the research team. We describe how we protect your information below.

We do not anticipate risks beyond these.

How will your information be protected?
The survey does not ask for your name. Survey responses will not be linked to your name or contact information. If you choose to provide contact information so that the team can invite you to a later focus group, it will be collected separately and will not be linked to your survey responses.

Survey data will be collected using SurveyMonkey and stored in the United States. Exported study files will be stored on an encrypted, password-protected computer in the United States, with an encrypted backup. Access is limited to the principal investigator. If you live in Canada, your information will be transferred to and processed in the United States, where privacy laws may differ from those in Canada. Results may be published or presented, but you will not be identified. De-identified data may be retained indefinitely.

We cannot promise complete confidentiality.

Is participation voluntary?
Yes. Taking part is entirely your choice. You may decline, skip any question after the eligibility section, or stop at any time. Doing so will not involve any penalty and will not affect your care, your relationships with any researchers, or your participation in any other study or community.

Because responses are not linked to your identity, we may be unable to remove your answers after you submit them.

Whom can you contact with questions?
Questions about the study, or if you feel uncomfortable during or after taking part: Contact Daniel Brickman, PhD at brickmand@gmail.com

Questions about your rights as a research participant, or concerns or complaints about the study: Contact North Star Review Board at info@northstarreviewboard.org. The IRB is a group that reviews research to protect the rights and welfare of participants and is independent of the research team.

Your consent
By selecting "I agree" below, you confirm that:
- you are 18 years of age or older;
- you have read (or had read to you) the information above and have had the chance to consider it; and
- you voluntarily agree to take part in this survey.