Studies Seeking Participants
Participating in research can bring new ways to help families today and build hope for a better future.
The following list is not all-inclusive. Studies vary in potential benefits and risks, who may be eligible, and the locations of clinical sites.
Consider enrolling in the FTD Disorders Registry. The Registry is a secure, non-profit database that serves to notify people when they may be eligible for a research study while learning through survey research from people with lived experience with FTD disorders.
Researchers interested in having their study information distributed to our community should contact research@theaftd.org.
The following clinical trials are recruiting people with FTD caused by GRN, a specific genetic cause of FTD. For more on FTD and genetics, click here. For some studies, you may not be eligible for future trials once you participate. Learn about all your research participation options before making a decision.
ASPIRE-FTD is a clinical study to research the effects of AVB-101, an experimental gene therapy designed to restore levels of progranulin in the brain, potentially slowing or stopping the progression of FTD-GRN. ASPIRE-FTD is the first study of AVB-101 in humans. It aims to evaluate the safety of AVB-101 and measure its effects on progranulin levels and the symptoms of FTD.
WHO CAN PARTICIPATE IN THE STUDY?
You may be eligible to participate if you meet the following criteria*:
- 30-75 years old
- Diagnosed with FTD-GRN (this will be confirmed with a genetic test)
- Have a caregiver who is able to support you (including attending study visits) for the duration of the study (5 years and 3 months)
*Other criteria will also apply.
WHAT IS THE STUDY TREATMENT?
The study treatment in ASPIRE-FTD is an experimental gene therapy called AVB-101, which contains a correct (non-mutated) version of the GRN gene. It is designed to restore levels of progranulin in the brain, potentially slowing or stopping the progression of FTD-GRN. AVB-101 will be delivered as a ‘one-time dose’ directly into the brain via a minimally invasive surgical procedure, performed by a study neurosurgeon at a specialist neurosurgical center.
WHAT DOES STUDY PARTICIPATION INVOLVE?
- Screening/baseline period
- This involves an initial screening visit where assessments and tests will be performed to see if you meet the requirements to take part in the study, and another visit closer to the planned date of surgery called the baseline visit where baseline tests are conducted (these are tests done before a treatment is given to compare to after a treatment is given). Each visit may be scheduled over 1 or 2 days, and the Screening/baseline period will last up to 12 weeks in total, to allow for collection of the various test results.
- Screening/baseline assessments include: a genetic test for a GRN mutation, physical and neurological exams, questions about your FTD symptoms and any medications you currently take, imaging of your brain (MRI), a heart test (ECG), a blood test and a lumbar puncture (where a small amount of spinal fluid is collected using a thin needle).
- Surgical procedure
- You will visit a specialist neurosurgical center to meet with a study neurosurgeon, who will discuss the surgical procedure with you and run a few more tests to check that you are ok to proceed with the surgery.
- During the surgical procedure, AVB-101 will be slowly delivered into the brain through thin needles called catheters. You will be under general anesthesia the whole time and unaware of the procedure taking place.
- After the surgery you should be up and walking within a few hours but will remain in hospital at least overnight as a precaution, for further monitoring and care. You will return home when you and the study doctor feel that you have recovered well enough to do so, which may be the next day or a few days after.
- Follow-up visits
- After the surgical procedure to deliver AVB-101 has been completed, you will attend regular follow-up visits at your local neurology center to have your health monitored and to measure the effects of AVB-101 on your progranulin levels and symptoms of FTD.
- Follow up visits include the following assessments (however, not all assessments will be done at every visit): physical and neurological exams, questions about your FTD symptoms and any medications you currently take, imaging of your brain (MRI), a heart test (ECG), a blood test and a lumbar puncture.
- You will be followed up for a total of 5 years after the surgery, with 8 follow-up visits in the first year after the procedure. Following this, visits will occur once every 6 months for the next 4 years.
- To help support you, a caregiver (e.g. your spouse, partner, relative or friend) will accompany you to all study visits, including surgery.
INFORMATION ON CLINICAL SITES AND CONTACT INFORMATION
For more information, a full list of clinical sites and contact details please visit:
https://clinicaltrials.gov/study/NCT06064890
You can also contact AviadoBio by phone +44 (0) 203 089 7917 or by email clinicaltrials@aviadobio.com
Recruiting through 2027
The up-LIFT-D study is investigating a gene therapy (PBFT02) that may treat individuals with frontotemporal dementia (FTD) who also have a mutation in the progranulin gene (GRN). Gene therapy aims to replace the gene that is not working properly with a version of the gene that works normally.
In the up-LIFT-D study, PBFT02 will be given once as an injection into an area at the back of the neck called the cisterna magna. This procedure will be done in a hospital under general anesthesia or sedation. The normal gene will be delivered using a carrier called a vector. A vector is a virus that has been changed so that it no longer causes disease, but instead includes a gene, in this case the GRN gene that normally makes progranulin. The virus used in this study is called an adeno-associated virus (AAV1) which has been engineered to carry the normal GRN gene to the brain.
You may be eligible for the up-LIFT-D study if:
- You are 35 to 75 years old
- You have been diagnosed with FTD and have a documented progranulin gene mutation
- You are experiencing symptoms related to FTD
- You have a reliable study partner, such as a family member or close friend, who can attend study visits with you
- You are living in the community
Information about the study:
- PBFT02 will be administered once
- Participation in this study will be for approximately 16 visits over 5 years
- Assessments will include blood tests, regular medical examinations, completion of questionnaires and assessments to evaluate disease progression, brain imaging, and lumbar punctures for CSF testing
- Travel reimbursement for study visits will be provided
Click here for more information about the study and research sites participating in the study.
PBFT02 has not been approved by the FDA or any other health authority approval around the world.
The PROCLAIM study is researching the safety and effectiveness of an investigational one-time gene therapy (PR006) that is designed to potentially treat patients diagnosed with a form of FTD caused by a mutation, or change, in the gene progranulin (GRN). This gene provides instructions to cells to make a protein called progranulin.
In the PROCLAIM study, a carrier called a vector is genetically engineered to deliver a normal copy of the progranulin gene. The vector is called adeno-associated virus 9 (AAV9). These viruses are specially modified so they cannot cause disease in people, and the body’s immune system clears the virus after the gene enters the cell nucleus and the virus is no longer needed. Gene delivery with an AAV9 vector has a track record of efficacy and safety. While this particular gene therapy has never been used before in humans, AAV-based gene therapies have been successfully used in treatments for other serious illnesses, including spinal muscular atrophy and retinal dystrophy.
The investigational drug will be injected into the back of the head near the top of the neck, into an area near the brain called the cisterna magna. This procedure will be done in the hospital under either general anesthesia or deep sedation. The study will examine if the investigational drug travels to the brain cells that contain the GRN mutation and successfully corrects or modifies the effects of the mutation.
You may be eligible for the PROCLAIM study if:
- You are between 30 and 80 years of age
- You have been diagnosed with FTD with a disease-causing GRN mutation
- You are experiencing symptoms related to FTD (examples include personality changes or changes in language skills)
- You have a study partner — i.e., someone who is close to you, such as a family member or close friend — who can attend study visits with you
Study participation will last for up to five years and will involve 20 visits to the study center, including one three-day visit, two or three days of which will be inpatient.
Additional information from AFTD:
PR006, the investigational drug being tested in the PROCLAIM study, is intended to treat the underlying cause of FTD-GRN at the genetic level. The study drug will be administered via an injection through the base of the skull near the back of the neck, and performed by a neurosurgeon or an interventional radiologist. The neurosurgeon or interventional radiologist will use computed tomography scans to safely guide the injection needle into the appropriate area. All participants taking part in this study will also receive the steroids prednisone and methylprednisolone as well as the immunosuppressant sirolimus. These medications are to reduce the risk of experiencing a reaction or other side effects during and after the injection.
As a part of baseline and follow-up visits, participants will undergo blood draws, electrocardiograms, MRI scans, MRA scans, DEXA scans, and lumbar punctures for cerebrospinal fluid (CSF) testing. Travel reimbursement for study visits will be provided.
Contact:
Prevail Therapeutics │ 917-336-9310 │ patients@prevailtherapeutics.com
Study site contact:
PPD Research, PPDOrlandoRecruitment.sm@ppd.com
You may also choose to find out more about the following featured studies:
Researchers at the University of Texas at Austin School of Nursing are looking for research participants to help reduce burden of caregiving on the health of Asian American midlife women family caregivers of persons living with Alzheimer’s Disease (PLAD) and related dementias.
You may be eligible to join if you:
- Are aged between 40 and 65
- Can read and write English, Mandarin Chinese, or Korean
- Live in the United States
- Identify as Chinese or Korean
- Are a community-dwelling family caregiver of a person living with Alzheimer’s Disease [PLAD] or a related dementia, such as FTD
- Are providing at least 4 hours per day (on average) assistance to PLAD
The research team: Dr. Eun-Ok Im and her team at The University of Texas, Austin want to learn effectiveness of the newly developed program in improving health outcomes of Asian American midlife women who are family caregivers of persons living with Alzheimer’s disease and related dementias.
About the study: TACAD study is an online study and does not involve medication nor travel. TACAD is Technology-based Information and Coaching/Support Program for Asian American midlife women who are family Caregivers of persons living with Alzheimer’s Disease.
Up to $150 will be provided during this 3-month study duration.
For more information, visit this link: https://tacad.research.nursing.utexas.edu/
or contact the study team at
tacad.help@austin.utexas.edu or 512-232-2323
Recruiting 6/2024 - 11/2024
Researchers want feedback on a new online self-help program for adults with dementia.
Researchers at the Institute for Disability Research, Policy and Practice and Utah State University’s Acceptance and Commitment Therapy Research Group are recruiting for a study evaluating an online, self-guided mental health program for adults with a recent dementia diagnosis (UtahACT.com/CompassionCompass.html). The program provides skills to help improve your quality of life by focusing on what matters most to you.
Participating in this study would involve completing a phone screener, participating in an online mental health program, online surveys at four time points (baseline, 10-15 minutes; post-test, 10-15 minutes; 2-week follow-up, 5-10 minutes; and 4-week follow-up, 5-10 minutes), and a qualitative interview (30-45 minutes). The online mental health program consists of one session and takes about 30-45 minutes to complete. You would receive up to $60 for completing all surveys and the interview after completing the program (all payments made via Amazon gift cards).
You need to have received a medical diagnosis for dementia in the past year, live in the United States, be fluent in English, be able to access the internet via a computer or phone, and have interest in completing an online mental health program in order to participate.
If you are interested, you can learn more by visiting the study website.
If you have any questions about the study, please contact the study coordinator at CMHP@usu.edu. The principal investigator for this study is Dr. Heather Kelley (heather.kelley@usu.edu) and this study has been approved by the USU Institutional Review Board (Protocol #14297)
Researchers at the Mayo Clinic are currently enrolling patients to participate in an observational study aimed at learning more about Primary Progressive Apraxia of Speech, Primary Progressive Aphasia and other related disorders. The study involves traveling to Mayo Clinic in Rochester, MN on a yearly basis to complete tests designed to help researchers learn more about these diseases and how they affect the brain over time. Participants will see a Neurologist, Speech Language Pathologist and have imaging scans like MRI, FDG PET, Amyloid PET, Tau PET and/or Neuroinflammation PET. All of the tests and doctor visits are covered by the study.
If you’re interested in learning more, please contact Sarah Boland, CCRP at boland.sarah@mayo.edu.
Recruiting 09/2023-5/2027
Are you the primary caregiver for a loved one with dementia?
The T-SCAN Lab at Rice University is seeking primary caregivers for a loved one with dementia, including FTD, to participate in a research study on emotion and coping strategies for caregivers. Participation is 100% online, meaning you can participate from the comfort of your own home or wherever you are. The full study involves about 6 hours of participation over the course of 3 months. You will be compensated via Amazon e-gift card for your time in the study, up to $120 total.
- Part 1: Study introduction and consenting process via live video chat
- Part 2: Questionnaires, heart rate monitoring, task introduction via live video chat
- Part 3: One week of daily brief check-ins via smartphone
- Part 4: Follow up questionnaires
Questions? Want to participate? Call/email Research Coordinator Nia Walls at 713-348-3528 or caregivers.tscan@gmail.com
Principal Investigator: Bryan Denny, PhD, Professor
Telephone: 713-348-8257, Email: bryan.denny@rice.edu
Recruiting March 2024 - March 2028
Who?
Individuals with a diagnosis of Primary Progressive Aphasia and their Communication Partners.
Why?
Researchers at the University of Chicago - Healthy Aging & Alzheimer's Research Care Center want to develop evidence-based strategies to maximize communication participation and quality of life and minimize burden of persons with PPA and their communication partners.
Where?
All components of the study take place remotely via telehealth.
How Long?
Over the course of 18 months, participants in the study will be involved in:
- Up to 10 evaluations with a licensed speech language therapist
- Up to 25 therapy sessions with a speech language therapist
- Exercises through a web-application
There are no costs to participate in this study. Compensation will be provided.
If interested, contact the study team for more information:
- Phone: (773) 795-1111
- Email: cbtrial@uchicago.edu
- Website: haarc.center.uchicago.edu
Yale PET Center is studying behavioral variant frontotemporal dementia (bvFTD) with the new synaptic density positron emission tomography (PET) tracer 18F-SynVesT-1. The new tracer binds to a protein in synapses and provides synaptic measurements in living people. By comparing this to a known PET tracer, 18F-FDG, this study seeks to provide early detection and progression of bvFTD. Participation involves one phone screening and at least three in-person visits to sites in New Haven, Connecticut. In-person visits include a screening appointment, a magnetic resonance imaging (MRI) scan, and up to two PET scanning sessions. The study will recruit 15 persons between the ages of 40 and 80 who have been diagnosed with bvFTD. For more information, contact Salih Cayir at 203-785-6355 or email salih.cayir@yale.edu
The Family Caregiver Study is an anonymous online survey for people living with and caring for a family member (or chosen family member) with dementia. The goal of this study is to learn how to make family caregiving easier, specifically when it comes to managing swallowing difficulties. Note: Caregivers are invited to participate whether or not their care recipient is experiencing any swallowing problems at this time.
To participate, you must:
- Be a caregiver for a family member (or chosen family member) with dementia
- Have been caregiving for at least 2 months
- Live at home with the care recipient
- Not be paid for the care provided
Participants will:
- Complete a 30-minute online survey of about 100 multiple choice questions
- Be asked questions relating to topics such as:
- how the caregiver feels about caregiving
- the medical condition of the care recipient with dementia
- the caregiver’s knowledge of swallowing difficulties and dementia
Compensation:
- $40 gift card
To learn more: Please contact the researchers at eatinglab@uoregon.edu or (541) 346-7494.
Researchers at several sites across Canada, led by Dr. Simon Ducharme, are conducting a study to see if a medication named nabilone, taken by mouth, can help reduce restlessness and agitation in people with Frontotemporal Dementia (FTD), including bvFTD and PPA. They are inviting people who are thought to have FTD and are experiencing these challenging behaviors to participate. The aim is to see if this medication can provide some calm and comfort compared to a dummy pill (placebo) that doesn’t contain any medicine.
You, or someone you care for, may be able to take part if you/they:
- Are over 18 years of age
- Have symptoms of FTD
- Experience agitation, irritability, or aggression
- Have an available study partner
- Are living in Canada
For more information about the study and research sites participating in the study, visit https://clinicaltrials.gov/study/NCT05742698?term=NCT05742698&rank=1
Nabilone has not been approved for FTD by the FDA or any other health authority.
Are you concerned you or a loved one has FTD? Have you recently had difficulties with planning, organizing, or solving problems? Changes in personality or mood that affect your daily life? Problems managing or completing task you’ve done before? If you are between the ages of 40 and 64, and are concerned about your thinking or memory ability, the BEYONDD study might be right for you. Volunteers from diverse populations (Latinx/Hispanic, Black/African American, Asian American, Pacific Islander, and American Indian/Alaska Native) are needed to help researchers improve brain health in these groups.
BEYONDD is a diverse team of doctors, scientists, and other researchers, working together to bring diversity and inclusion to early onset dementia (EOD) research by reaching out to adults from diverse populations. EOD impacts people at the peak of life. It changes the way people think, act, talk, and behave. Little is known about EOD in diverse populations.
Join the study looking to lower the health disparities in the U.S. and make sure that people of all races are included in finding new ways to treat EOD. Study volunteers get some amazing perks. You’ll get to work with world-renowned experts and learn more about your own health. You’ll have access to digital tests of thinking and memory, clinical laboratory tests, and feedback from the clinical team – all from the comfort of your own home. If you are able and willing to come into one of BEYONDD’s expert centers after completing the online study, you can access a one-on-one session with a BEYONDD doctor and brain scans. Even better, it’s all at no cost to you.
For more information, visit www.beyonddproject.org or call us at 1 (866)-7MYMIND.
Researchers from Indiana University, in collaboration with a small business, CareVirtue, recently received funding from the National Institutes of Health (NIH) to study whether a personalized legal and financial planning platform for family caregivers of people living with Alzheimer’s disease and related dementias is useful. They are currently looking for family caregivers to participate in this research study.
The study asks you to use CareVirtue Planner, a financial and legal planning platform that provides financial and legal planning education and support to family caregivers of people living with dementia on a laptop or desktop computer for 3 months, and to answer questions about your experience using CareVirtue Planner during and after your time using the platform. If you agree to participate, you will be compensated up to $150 and will be able to use CareVirtue Planner without cost for one year. At the end of one year, you will be able to opt into the paid version of CareVirtue.
To be eligible, participants must:
- Be a self-identified primary caregiver status for someone with Alzheimer’s disease or related dementias
- Have access to the internet and access to a laptop or desktop computer
- Be over the age of 18
If you are interested in participating or to learn more, please contact study team led by Dr. Werner at werneriu@indiana.edu. Your email will not obligate you to take part in the research study. Your participation is completely voluntary, and you can change your mind at any time.
Researchers at Rutgers University are launching the largest brain marker study in New Jersey to understand what our brain cells are telling us about aging and dementia.
You may be able to take part if:
- You are healthy with no memory concerns or only age-related changes;
OR
- You have a diagnosis of mild cognitive impairment (MCI), Alzheimer’s dementia, frontotemporal dementia (FTD), primary progressive aphasis (PPA), or dementia with Lewy bodies
Study activities include:
- A short health survey
- Brain MRI
- Pencil-and-paper tests on your memory and thinking
- A brief & safe procedure to collect a small sample of spinal fluid from your low back.
Lead scientist: William Hu, MD, PhD
Study Contact: Alice Dawson (732)-595-6336 Memory411@rutgers.edu
This study aims to understand how taking care of a spouse with dementia affects the mental and physical health of caregivers. The goal is to help researchers develop a writing intervention for stress and grief that is unique to the experience of caring for a spouse with dementia. If you agree to take part in this study, you will be invited to participate in up two 90-minute focus groups moderated by Dr. Angie LeRoy and a research assistant. Participants will be compensated $30 for each focus group they participate in.
ELIGIBILITY
- Self-identify as the primary caregiver to your spouse (with a diagnosis of Alzheimer’s disease and related dementias, including FTD)
- Devote at least 4 hours of daily caring of your spouse for at least the last 3 months
- Must be married or self-defined as a long-term committed partner to your spouse with Alzheimer’s disease or a related dementia for at least 3 years
- 60 years or older
For more information, contact the researchers at HEALingresearch@baylor.edu or (254) 710-1550
Researchers at the Canadian Consortium on Neurodegeneration in Aging is seeking Canadian FTD caregivers and healthcare providers who can share their experience and contribute to the improvement of FTD clinical care.
Study purpose: To gain a better understanding of the journey of people with a diagnosis of frontotemporal dementia or a related disorder and their caregivers within the Canadian healthcare system.
Eligibility:
Canadian, aged 18 years or older, and a:
- Caregiver of a person who received a diagnosis of:
- Frontotemporal dementia, behavioral variant (bvFTD)
- Primary progressive aphasia (PPA)
- Corticobasal syndrome (CBS)
- Progressive supranuclear palsy (PSP)
- FTD with amyotrophic lateral sclerosis (FTD with ALS)
Or
- Healthcare provider of patients with aforementioned clinical diagnoses.
For more information, contact frontotemporal.research@gmail.com or click here to access the study survey: https://www.surveymonkey.com/r/Canadian-Survey-on-FTD-and-Related-Disorders
Duke University is recruiting patients with Alzheimer’s, frontotemporal dementia, mild cognitive impairment, Parkinson’s, Down syndrome, multiple sclerosis, PTSD, concussion, traumatic brain injury, dementia, or other neurodegenerations fora study to take noninvasive pictures of the retina in your eyes.
No x-rays, no eye drops and no eye contact. Compensation for time/travel.
You may be eligible for this research study if you:
- Do not have a significant head tremor
- Are not in a wheelchair
- Have not had prior retina surgery
- Are willing to have some undilated pictures of your retina
Email iMIND@duke.edu for further details! Please feel free to forward this message to friends or family members who may be interested in participating in this study. The study visit takes 30-45 minutes. No charge to you or your insurance. The study is being conducted at the Duke Neurological Disorders Clinic, 932 Morreene Rd, Durham, NC 27705.
Researchers at the University of Pennsylvania are conducting a study to determine whether a form of non-invasive brain stimulation called transcranial direct current stimulation (tDCS) in combination with constraint-induced language therapy (CILT) can improve the language abilities of people with primary progressive aphasia (PPA).
tDCS uses a mild electrical current, about the same strength as a 9-volt battery, to stimulate regions of the brain from outside the head. This is performed using two small electrodes placed inside saline-soaked sponges held on the scalp using an elastic band. CILT is a form of speech therapy that focuses on improving speech production in everyday life.
Who may be eligible to participate?
- Must be at least 45 years old
- Must have aphasia due to PPA
- Must be proficient in the English language
Participants will be compensated for their time and travel.
For more information, please contact the Laboratory for Cognition and Neural Stimulation at 215-573-4336 or braintms@pennmedicine.upenn.edu.
Researchers at Clemson University under the guidance of Dr. Emma Dixon (eschare@clemson.edu) are inviting people with age-related cognitive changes to participate in a research study exploring the use of apps on smartphones. The study involves your participation in a 1 time 25-minute online survey. There are no monetary incentives for participation, but your input will help researchers understand how smartphones are used by people with age-related cognitive changes. By understanding this, they hope to design more accessible smartphone applications that fit the desires of end-users with age-related cognitive differences.
REQUIREMENTS:
- 18 years of age and older
- Self-identify as a person living with subjective cognitive decline or have been diagnosed by a medical professional with mild cognitive impairment or dementia.
Contact: To get more information about the study and/or to sign up for the study, please email Margi Engineer (mengine@g.clemson.edu) indicating you’d like to participate in the survey.
What: Arizona State University is surveying former dementia caregivers via telephone to better understand who does better and who does worse after a death due to dementia. They also want to learn how some former caregivers meet their needs so they can share those strategies with others. This phone survey should take no longer than 60 minutes and they will pay $50.00 for your time and insights. Participation is voluntary.
Where: Participate from the comfort of home via telephone, or elsewhere if preferred.
Who is Eligible: Anyone that is 18 years or older and is a former caregiver for a person with dementia who is now deceased.
Contact: Former Dementia Care Lab, Arizona State University, 602-543-4492, formerdentiacare@asu.edu or click here to fill out an interest form
ACT for Caregivers is a web-based self-training program where caregivers learn about dementia, learn to cope with distress, and practice focusing on doing what matters.
- Learn research-based skills to manage stress
- Complete the program in 30 days or less
- Work at your own pace on your own computer
To participate, you must:
- Care for someone with Alzheimer’s disease, dementia, or memory loss, even if you don’t live with them
- Be over 18 years old
- Read and write English
- Live in the United States
- Have access to a computer, smartphone, or tablet with internet
You will be asked about distress you feel from your role as a caregiver, and if are interested in an online self-guided program.
How much time will it take?
- Modules take 30 min per week 1-2 times per week for about 4 weeks
- Online surveys take 30 minutes each 3-4 times
- Two optional phone or Zoom interviews take 60 minutes each (interviews are by invitation; not all who are interested will be selected)
Earn up to $100 in Amazon Gift Cards.
To learn more about participating, contact the research team at 435-797-1715 or email ACTforCaregivers@usu.edu
Recruiting through December 2024
Researchers at the University of Nebraska at Omaha are looking for older caregivers to an individual with Mild Cognitive Impairment, Alzheimer’s disease, or Frontotemporal Dementia in Nebraska, Iowa, Missouri, Kansas, South Dakota, North Dakota, Illinois, Michigan, Indiana, Wisconsin, Minnesota, and Ohio.
Study Information: IRB #0298-22-EP
- The study includes an online visit over zoom for approximately 90 minutes.
- Compensation for study participation is available.
- Experiment involves online questionnaires, interview, and computer tasks with a research assistant.
Eligibility criteria:
- Adult 50 years of age or older.
- Currently an unpaid family caregiver to an individual with Mild Cognitive Impairment, Alzheimer’s disease, or Frontotemporal dementia for 5 hours a week or more, and for at least 6 months.
- Comprehension of written and spoken English
- Completed a minimum of two years of high school or higher
- Normal or corrected to normal vision and hearing
Exclusionary Criteria:
- Neurological or psychiatric disease (e.g., stroke, depression), or drug or alcohol abuse
- Vision or hearing issues that are not corrected to normal
- Cognitive or motor difficulties
- Currently pregnant or breastfeeding
For More Information Contact, Naomi Adjei at: Ph:402-554-5961; email: ABELabUNO@gmail.com
Caring for a family member with dementia is demanding, and research has shown that it can negatively affect the physical and mental health of caregivers. This research study is being done to develop a unique matching process for connecting current and former caregivers with one another for the purpose of peer-to-peer emotional support. The study will help researchers determine whether caregivers of persons with dementia would find a technology-based caregiver matching program valuable.
What will you be asked to do? Participants in this 15-month study will complete an online matching profile, engage with caregivers they are matched with, complete questionnaires approximately every three months and touch base with the study coordinator.
Who can participate? Persons who have been in a caregiving role for someone with dementia for at least three months.
You may qualify if:
- You are a current or former dementia caregiver
- You have access to the internet
Participation involves:
- Using a web-based matching tool to meet other caregivers
- Completing questionnaires and surveys over the course of the study
- Checking in with a study coordinator at 3 time points
- Connecting with up to 5 caregivers over the course of the study
Potential benefits:
- Find new connections with whom to share your caregiving experience
- Give and receive emotional support related to dementia caregiving
Compensation available for participants.
For more information or to complete an eligibility screening: Email connect2caregivers@mayo.edu or visit C2C-General-Study-Information.pdf (prod-carehubs.net)
This study is enrolling children and young adults from families with frontotemporal dementia (FTD) and Alzheimer’s disease (AD) caused by genetic variants. For FTD, these include MAPT, GRN, or C9orf72. The purpose of this study is to better understand brain development in families with dementia. Brain development in persons from genetic FTD and AD families will also be compared to persons from neurodiverse populations.
Participation involves a 2- to 3-day visit to the University of California, San Francisco. This visit includes clinical and cognitive evaluation, MRI brain scan, emotions testing, questionnaires, and a saliva sample for genetic testing. Participants and their family members will not learn their mutation status. Participants must be between 7 and 17 years old (young adults up to 25 may be eligible), have a biological family member with genetic FTD or AD, and have a study partner who can accompany them. Travel, lodging, and meals will be reimbursed; and monetary compensation for the study will be provided. Target enrollment is 190 participants. You can find more information here.
Cerevel Therapeutics is studying CVL-871 as a new experimental drug for apathy across dementias, including frontotemporal dementia (FTD). Apathy is a loss of interest in everyday life and lack of motivation. Apathy is often a forgotten symptom of dementia, although it is very common in people with dementia. There is currently no cure or approved medications for dementia-related apathy.
This study aims to find out:
- How safe the study drug is
- How well it is tolerated
- How it may how it may work in the body
You, or someone you care for, may be able to take part if you/they:
- Are 50–85 years of age
- Have been diagnosed with dementia (including FTD)
- Have dementia-related apathy (loss of interest in everyday life and/or lack of motivation)
The study has three parts:
- Screening period (up to 4 weeks)
- You and your caregiver will visit the study center to see if the study is suitable for you and whether you want to take part
- Study treatment period (12 weeks)
- You will have:
- 3 visits in person to the study center for study assessments
- 2 visits to your home by a home healthcare professional (or if you prefer, at the study center)
- 4 contacts by phone or internet chat
- You will be given the study medication to be taken once each day
- You will have:
- Follow-up period (4 weeks)
- You will have 1 visit to your home by a home healthcare professional (or if you prefer, at the study center)
- You will be contacted once by phone or internet chat
For more information about the study and research sites participating in the study, or visit ClinicalTrials.gov
CVL-871 has not been approved by the FDA or any other health authority.
The Frontotemporal Degeneration Center and the Linguistic Data Consortium at the University of Pennsylvania are working to develop simple, easy, and effective ways to track neurocognitive health through short interactions with a web app. You can help us create a large open dataset, which researchers all over the world will use to create and test automated methods to track neurocognitive health.
Today, diagnosing neurodegenerative disorders like Alzheimer’s Disease or Frontotemporal Degeneration depends on someone scoring below a low threshold on clinically administered tests, which often means that they’ve been suffering from the disease for some time. Often the time to diagnosis can be a decade or more if you live remotely or the condition has an uncommon clinical presentation. Easy and reliable tracking over time, including remote monitoring, will let us identify early changes and allow more timely diagnosis, and to see how neurocognitive health changes over time. The same methods will support large-scale evaluation of interventions, whether those are medications or lifestyle changes.
This project is not just aimed at participants with cognitive impairment, or even at elderly people — we need all ages and backgrounds and conditions. The tasks involve oral descriptions of two pictured scenes, and naming as many words as you can in a minute that are from a target category. We will publish an anonymized version of the data for use by research groups worldwide.
To participate in the first step of this project, which should take less than five minutes of your time, click here.
Recruiting from September 2007 to April 2027
The Language in Primary Progressive Aphasia (PPA) study aims to understand the behavioral, anatomical and physiological changes in people with PPA throughout the course of the illness. The researchers in this study want to increase awareness of PPA, educate others about this unique disorder, and to encourage more research to eventually develop therapies.
During the three-day research program, participants will be asked to undergo neuropsychological testing (paper and pencil tests that evaluate cognition), advanced imaging (MRI and PET), eyetracking experiments, and other computer and language testing batteries. Participants may be asked to return every two years to complete the same measures.
For participants not living near Chicago, IL, flights and accommodations (for both the person with PPA and their companion) will be covered by the study.
Additional information from AFTD:
During this three-day research program, participants will be asked to undergo neuropsychological testing (paper and pencil tests that evaluate cognition), an MRI (a non-invasive brain-imaging procedure), eyetracking experiments and other computer and language testing batteries. Participants may be asked to return every two years to complete the same measures.
The study will recruit approximately 15 participants with PPA per year. For participants not living near Chicago, IL, flights and accommodations (for both the person with PPA and their companion) will be covered by the study.
Contact: Seyi Adeolu | 312-503-2398, seyi.adeolu@northwestern.edu
Clinical trials and studies aren’t the only way to participate in research! You may also wish to consider:
- The FTD Disorders Registry features ways to participate in research, to spur innovation that will lead to effective treatments and therapies.
- ALLFTD Study – ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD) is a comprehensive natural history study that targets the progression and treatment of FTD, open to anyone with an FTD disorder and to any member of a family with a history that suggests FTD. Funded by the National Institutes of Health (NIH), ALLFTD combines the research efforts of the existing Advancing Research and Treatment of Frontotemporal Lobar Degeneration (ARTFL) and Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) studies to form a multi-side consortium that allows researchers to work collaboratively to advance FTD knowledge for future clinical trials. ALLFTD is now actively recruiting participants at certain study sites, depending on local conditions. To ensure safety during the COVID-19 pandemic, the project is recruiting and seeing participants using a mix of in-person and virtual telemedicine appointments. You can visit the ALLFTD website to find the study site closest to you and contact the site coordinator for more information.
PLEASE NOTE: AFTD is under no obligation to publicize any study, and may turn down such a request at any time. AFTD at no time “endorses” or “approves” any study, whether or not it chooses to publicize it.
Find Help
Connect with others nearby who are walking the same road.
- Select A State to Begin
-
-
- Alabama
- Alaska
- Arizona
- Arkansas
- California
- Colorado
- Connecticut
- Delaware
- Florida
- Georgia
- Hawaii
- Idaho
- Illinois
- Indiana
- Iowa
- Kansas
- Kentucky
- Louisiana
- Maine
- Maryland
- Massachusetts
- Michigan
- Minnesota
- Mississippi
- Missouri
- Montana
- Nebraska
- Nevada
- New Hampshire
- New Jersey
- New Mexico
- New York
- North Carolina
- North Dakota
- Ohio
- Oklahoma
- Oregon
- Pennsylvania
- Rhode Island
- South Carolina
- South Dakota
- Tennessee
- Texas
- Utah
- Vermont
- Virginia
- Washington
- West Virginia
- Wisconsin
- Washington, D.C.
- Wyoming
- Puerto Rico
- American Samoa
- Guam
- U.S. Virgin Islands
- Northern Mariana Islands
-
-