Will I get to meet with a Neurologist?

Yes! You will meet with a clinician at each annual study visit.

Why do I have to be there for 2-3 days?

We do our best to schedule your visit in as few days as possible; however there are several procedures associated with each visit so it is possible that you will spend 3 days at your participating site as part of your annual visit. Each research study visit consists of completing questionnaires with a study coordinator, answering memory and thinking questions, a blood draw, a MRI scan, meeting with a clinician, and a lumbar puncture (if you're willing).

If I participate in ALLFTD does that mean I have FTLD?

Participating in ALLFTD doesn't mean you have FTLD. We are recruiting from a families with a known mutation linked to FTLD. If you are from a family with a known mutation, you can participate regardless of your mutation status and regardless of your knowledge of your mutation status. We also don't require you to know if you carry the family gene linked to FTLD in order to participate in ALLFTD.

I don’t have Frontotemporal Dementia why should I participate?

Family members that don't carry the mutation serve as our controls, which are important to help better distinguish between changes happening due to FTLD progression versus natural aging.

What I happens if I don’t do all the study visits?

This is a research study so your participation is completely optional! We do, however, hope that you will continue to participate in ALLFTD every year.

Can I choose to not continue with the study if I didn’t like my first visit?

Yes. ALLFTD is a research study so it's completely optional. We ask that you let the site know if you're no longer interested in participating. If you feel comfortable providing a reason for discontinuing your participation, we'd love to know so we can better understand participant concerns and work to make improvements.

Some of my family members are going to a different site than I am, can I switch sites?

You can transfer sites if needed, however we do ask that if you're able, that you please stay with the same site for the duration of the study.

Do I have to go to the site closest to me?

You don't have to go to the closest site to you. ALLFTD has 23 sites across North America, and you are welcome to contact any site you'd like to participate at regardless of its proximity to you.

Why do I have to have a study partner?

You need to have a study partner who has at least weekly contact with you because there are some questionnaires that we need your study partner to complete. These questionnaires are generally focused on how your study partner thinks you've been feeling or acting so it is important that your study partner has frequent contact with you in order to capture the most accurate information. Collecting this data is important for furthering our understanding of FTLD.

Can my study partner be different from last year?

Your study partner can be different from last year, however we hope that you can use the same study partner year-to-year.

Does my study partner have to come with me or can they do their part over the phone or by email?

If you don't need your study partner to assist you with daily activities or traveling, the study partner based questionnaires can be completed over the phone or via email. If you're not sure if your study partner should come to your in-person visit, please check with your site.

Are there other studies I can participate in?

Potentially! Please check here for a list of current studies to see if there are any you might qualify for. You can also check with your site to see if there are any new/additional opportunities.

Are there any drug trials open?

Yes! There are currently drug trials for those with a specific familial mutation. You can learn more by visiting clinicaltrials.gov. We hope there will continue to be additional studies opening in the near future.

How do I tell my family about ALLFTD?

We have a helpful Information Sheet that we encourage you to share with your family.

I’ve told my entire family about this study and they all want to participate. Can you call my siblings to help get them started?

Thank you so much for letting your family members know about our research study! Unfortunately, we can't reach out to a potential research participant if they haven't contacted us first. Please have your family members reach out to the site they are interested in participating at, we have contact information for each site here.

Memory testing makes me nervous, what if I fail?

Feeling nervous about the memory and thinking questions is very normal, so don't worry! There is no passing or failing, we just like to gauge how different parts of your brain are working (which is why there are so many different types of questions).

How old do you have to be to participate in ALLFTD?

You must be at least 18 years old to participate in ALLFTD.

Where can I find more information?

Our Patient Advocacy groups have excellent online resources. You can find out more here.

Do you offer support groups?

At this time ALLFTD does not offer support groups, however many sites will have information on support groups in your area. Please reach out to your site directly for information regarding local support groups.

The Association for Frontotemporal Dementia also offers several regional support groups. Please check out their website for additional information.

Can you recommend some good books for caregivers?

1. The 36-Hour Day By Nancy L. Mace, MA, and Peter V. Rabins, MD, MPH
2. What If It's Not Alzheimer's? A Caregiver's Guide to Dementia by Gary Radin and Lisa Radin
3. Coping with Behavior Change in Dementia: A Family Caregiver's Guide by Beth Spencer and Laurie White
4. Caring for a Loved One with Dementia: A Mindefulness-Based Guide by Marguerite Manteau-Rao, LCSW
5. Ten Thousand Joys & Ten Thousand Sorrows: A Couple's Journey Through Alzheimer's by O.A. Hoblitzelle
6. The Best Friends Approach to Dementia Care by Virginia Bell, MSW, and David Throxel, MPH

Do I have to have a lumbar puncture?

Nope! We hope you will have a lumbar puncture, but it's completely optional.

Why is lumbar puncture important?

Lumbar puncture is very important because we are able to collect cerebral spinal fluid (CSF). CSF is the clear fluid that surrounds the brain and spinal cord that tells us about the health of the brain. Current research shows that there are proteins in the CSF that are changing before symptoms are identified in the clinic.

What is a lumbar puncture like?

Many people say a lumbar puncture is like getting an epidural. For those that haven't experienced an epidural, the procedure is pretty straight forward. You will lie down on your side and a trained health professional will apply lidocaine (or a similar medication) to your lower back to numb the area. They will then use a thin needle to remove the cerebral spinal fluid. Most lumbar punctures take only about 15 minutes so it'll be over before you know it!

If I did a lumbar puncture last year do I have to do one this year?

The lumber puncture is always optional, but we hope you will do one eith every visit.

Can I do the lumbar puncture first and get it over with?

You probably won't be able to do a lumbar puncture as your very first visit procedure because there are a few things (like signing the consent form) that have to happen first, but please let your site contact know you'd like to do the lumbar puncture sooner rather than later so they can consider that when putting your schedule together.

How soon after a lumbar puncture can I fly on an airplane?

It is recommended that you wait at least 24 hours after a lumbar puncture before getting on an airplane.

What should I do after my lumbar puncture?

Please rest! It is very important that you drink extra fluids and avoid any strenuous activity for the few days after your lumbar puncture.

What are some common side effects experienced following a lumbar puncture and what should I do if I experinece these side effects?

The two most common side effects are headache and lower back pain. If you experience a headache after your lumbar puncture please continue to rest, drink a lot of fluids, and treat it how you would normally treat a similar headache. If the headache persists for a week or you start to experience migraines please contact your site for further assistance. If you experience lower back pain, please continue to drink a lot of fluids and rest.

Will I be paid to participate in this study?

Yes, you will be paid for your time and some of your travel expenses will be reimbursed. For specific payment information please contact your site or your site of interest.

How do I get reimbursed for my travel expenses?

If you would like to be reimbursed for your travel expenses please provide itemized receipts to your site study coordinator after or at the end of your visit. You will receive your reimbursement after your site study coordinator has processed the, request; this could take up to a few months.

Will the research study pay for a rental car or reimburse for an Uber/Taxi ride?

The study will not reimburse for a rental car. The site you select may or may not reimburse for a taxi/uber ride, please ask your site about their specific travel reimbursement policies.

Will my insurance company know if I have a genetic mutation if I do clinical testing through this research program?

It is likely that the results from clinical testing will be in your clinical record, and therefore something an insurance company could have access to. For further information relating to genetic testing resutls please contact your site or your site of interest.

Why do I have to have two sepearte appointments a few weeks/months apart to learn my genetic mutation status?

Most ALLFTD sites follow the Huntington's disease model, meaning if you don't have symptoms, you will have pre-genetic appointments with a psychiatrist and an appointment with a genetic counselor. If all three parties (the two clinicians and yourself) choose to proceed with testing your site will work with you to schedule genetic disclosure appointments where you will learn your genetic status.

What can I expect from my "pre-genetics" appointment?

Your pre-genetic appointment with a genetic counselor will provide you with general information about genetics and also more information about things to have in place before proceeding, such as long-term life insurance. The pre-genetic appointment with a psychiatrist will be more focused on your motivations for learning and what life might look like after learning your results.

What can I expect from my "disclosure" genetics apointment?

Your genetic disclosure appointment with the genetic counselor will provide you with your results. Your genetic disclosure appointment with the psychiatrist will discuss how you're feeling after learning your results.

Will I have the same genetic mutation as my siblings or can I have a different mutation?

Yes! If you both carry the genetic mutation, you and your siblings will have the same genetic mutation.