Participating in research can bring new ways to help families today, and build hope for a future without this disease. You may choose to find out more about the following featured studies:
A Study of In-Home Technology for Dementia Caregivers
UC Berkeley researchers are evaluating an in-home technology system designed to reduce worry and loneliness in dementia caregivers. Eligible caregivers must enroll by end of October 2019, live in Los Angeles, Orange County, the Bay Area or Las Vegas, live with a person diagnosed with dementia, be fluent/literate in English, own an iPhone, and have in-home wireless internet. All technology is provided and installed for free, including various sensors and an iPad. The system alerts caregivers to potential risks like falls, episodes of wandering, and home alerts like water leaks or forgotten stove-tops. The system also includes a “Social Connector” app keeping caregivers connected to their friends and family. Participation includes completing four online questionnaires throughout the nine-month study. Caregivers will be paid $175 for completing all questionnaires and are able to keep the technology.
A Study of a New Mobile Program to Support Caregiver Well-Being
Researchers are looking for family and/or friends that care for a loved one with dementia to participate in a month-long study to evaluate a new mobile program to support caregiver well-being. Eligible caregivers must enroll by October 9, spend at least eight hours a week caring for a loved one with dementia, be fluent/literate in English, and own a phone that can receive text messages. Participation includes completing two online questionnaires, completing about five brief web-based activities, and receiving daily text messages for one month. Caregivers will be compensated for their participation.
A Phase 2 Clinical Trial of Intranasal Oxytocin for Frontotemporal Dementia
The “FOXY” study will use a medication called oxytocin, a hormone normally found in the brain which is related to social behavior. The oxytocin will be given as a nasal spray twice daily with the assistance of the care partner. To participate in this clinical trial, you must have a diagnosis of behavioral variant FTD, or semantic dementia (also called semantic type aphasia; non-fluent aphasia; or non-fluent, agrammatic type aphasia). Participation in this study is voluntary.
You may be eligible to participate if:
- You have a diagnosis of probable bvFTD, semantic dementia or non-fluent type aphasia
- You currently have symptoms of apathy/indifference as measured on the NPI scale
- You have a care partner or family member who can assist with administration of the nasal spray
- You are between 30-80 years of age and have no history of stroke or neurologic disorder other than FTD
The study will last for 22 weeks, which will include five visits to the clinic site. A care partner/family member who lives with the person with FTD, or sees them for at least three hours per day, is required to administer the nasal spray. The care partner/family member must be able to accompany the person with FTD to all study clinic visits. Each study site will provide reimbursement for travel expenses to the clinic according to their site guidelines.
There are six participating sites in the U.S., located in Los Angeles, San Francisco, Seattle, Baltimore, New York City and Boston. There are four participating sites in Canada, located in Vancouver, London, Toronto and Montreal.
For more details on participant eligibility, please visit ClinicalTrials.gov.
If you are interested in participating in this study or would like more information, please contact Kristy Coleman ([email protected]).
Phone interview research study for persons diagnosed with bvFTD and their care partners
Biogen, a biotechnology company based in Cambridge, MA is partnering with ICON, an established contract research organization, to conduct phone interviews with persons diagnosed with behavioral variant FTD (bvFTD) and their care partner (informant). The purpose of the study is to better understand the symptoms and daily living experience of bvFTD, as well as the usefulness and relevance of different questionnaires. Information gathered in the phone interview will help Biogen learn what questionnaires and topics are most relevant to persons living with bvFTD and their families.
Both persons with bvFTD as well as their informant (care partner) can participate in this phone interview-based research study. The phone interview for persons with bvFTD would last approximately one hour. The informant (care partner) would be interviewed on a separate call which could last up to two hours. Participation in the study is completely voluntary and would not affect current treatment or be included in the medical record of the person diagnosed. All participants must be fluent in English and at least 18 years of age at the time of signing the informed consent. If the person with bvFTD is unable to give informed consent, the informant must have power of attorney/legal guardianship to consent on their behalf.
Additional information from AFTD:
A person diagnosed with bvFTD who is interested in participating:
- Must have a probable bvFTD diagnosis supported by clinical and imaging history (sporadic FTD) or a clinical diagnosis supported by a known mutation in the MAPT, GRN or C9ORF72 genes (familial FTD)
- Must be able to understand the purpose of the study and provide signed and dated informed consent. If the person with bvFTD is unable to consent, they must have a legal guardian/power of attorney who is willing to provide informed consent for them
Click here to get more information on this study if you are a person diagnosed with bvFTD.
An informant (care partner) who is interested in participating:
- Should be a family member or friend of the person diagnosed, who can accurately report on the person’s disease experience as well as give a comprehensive picture of their activities of daily living
- Must be able to understand purpose the study and provide signed informed consent
Click here for more information if you are an informant (care partner) for a person with bvFTD
If you are interested in learning more about this study, or volunteering as a participant, please contact:
Rehabilitation of Speech and Language in Primary Progressive Aphasia (PPA)
Researchers at the University of Texas at Austin’s Aphasia Research Treatment Lab and the UCSF Memory and Aging Center are conducting a study to develop effective speech and language treatment options for individuals with primary progressive aphasia (PPA). They are investigating treatment approaches that can be delivered in person or via the computer, and hope to learn about both immediate benefits of therapy, as well as long-term outcomes. In addition, eligible individuals may undergo MRI scanning in order to inform researchers about how brain structure and function affect response to therapy.
You may be eligible to participate if you:
- Have a diagnosis of primary progressive aphasia (PPA)
- Do not have any other neurological or psychiatric diagnoses
- Do not have uncorrected visual impairments
- Speak English, Spanish, or are bilingual (i.e., English + any other language)
Participation in this speech and language treatment study can occur via teletherapy or in person (for those who live locally to one of our research sites: Austin, Texas or San Francisco, California).
Note that other eligibility criteria may apply. An initial screening will take place with a research coordinator in order to determine eligibility for participation.
Participation in the study will include pre-treatment assessment, tailored speech and language treatment and post-treatment assessment. Testing and treatment are completed over the course of 3-4 months. During the assessment phases, participants will meet with a clinician 2-3 times weekly for testing sessions (about 1-2 hours per session). During the treatment phase, participants will meet with a clinician twice weekly for therapy sessions (about one hour per session). Independent daily home practice will occur over the computer.
The participant and a care partner may be asked to travel to one of the research sites during the pre-treatment and/or post-treatment assessment phases. Airfare, lodging and a fixed stipend will be provided.
Follow-up assessment sessions will take place at 3-, 6-, and 12-months after treatment ends. Participation in the study is completely free of charge.
Analysis of Language and Speech in Patients with Frontotemporal Dementia (FTD)
Winterlight Labs, a technology company, and Alector, a biopharmaceutical company based in San Francisco, are partnering to conduct a speech assessment study in persons diagnosed with behavioral variant FTD (bvFTD) or primary progressive aphasia (PPA). The purpose of the study is to evaluate whether an in-home speech assessment that uses an iPad application can detect changes in how the brain processes information in FTD. By analyzing how you speak, Winterlight Labs and Alector may be able to detect changes in brain information processing that cannot be detected with other tests.
You may be eligible to participate in this study if:
- You are between the ages of 45 and 90
- You have been diagnosed with bvFTD or PPA within the past 12 months
- You have a relative or caregiver who can administer the assessments
Winterlight will send study participants an iPad in the mail. Over a 12-month period, participants will complete a series of six short assessments on the iPad using the Winterlight app. Each assessment should take about 15 minutes to complete. At the end of the study, participants will be able to keep the iPad.
Additional information from AFTD:
Persons diagnosed with bvFTD or PPA may be eligible to participate in this 12-month study, which will use an iPad app to evaluate speech patterns that may reflect FTD-related changes in the brain. Participants will complete six assessments on an iPad supplied by Winterlight Labs, which they will be able to keep at the end of the study. The first three assessments will occur one month apart and the remaining three assessments will occur three months apart (i.e., 6 months, 9 months, and 12 months after beginning the study). No travel is involved – all of the assessments will be done at home, using the Winterlight app. Each assessment will take about 15 minutes to complete.
Participants must have a family member or caregiver who can guide them through the assessments. There is no cost to participate in this study and it does not involve any medical treatments or procedures.
Click here for more information. If you are interested in participating in this study, you can contact Winterlight Labs by calling toll-free to 1-833-WINLABS (1-833-946-5227) or via email: [email protected].
Phase 1 clinical trial for AL001 — A first in human study in healthy volunteers and in participants with Frontotemporal Dementia with Granulin mutation
A clinical trial, sponsored by Alector, Inc. is now recruiting healthy volunteers, volunteers who are progranulin gene mutation carriers but do not have FTD symptoms and volunteers who have been diagnosed with FTD. Alector has developed a new monoclonal antibody therapy, which is a type of immunotherapy. In this case, a specific antibody has been developed that can bind to cells or proteins and encourage the patient’s own cells to increase progranulin back to normal levels and hopefully slow or stop progression of the disease.
The purpose of this Phase 1 clinical trial is to test the safety and tolerability (possible side effects) of this new therapy in healthy volunteers, progranulin gene mutation carriers but do not have FTD symptoms and persons diagnosed with frontotemporal dementia due to the progranulin gene mutation.
You may be eligible to participate if:
- You are a progranulin gene mutation carrier and have no symptoms and not yet been diagnosed with frontotemporal dementia
- You are diagnosed with frontotemporal dementia with the progranulin gene mutation
- If you have FTD symptoms, a knowledgeable caregiver is required to accompany the participant
- You are between the ages of 18 and 65
For participants who are gene mutation carriers, but do not have FTD symptoms:
- The study will only last 5 months, including 14 visits and 1 overnight visit (drug will be delivered by intravenous infusion at the clinical site and each volunteer participant will only have one overnight stay, the day of the infusion)
- Three lumbar punctures, plus blood draws and ECG will be required over the course of the study
- Travel will be reimbursed as approved by the site’s Institutional Review Board (IRB). For asymptomatic carriers, there may be additional compensation for their time in addition to travel
For participants who are gene mutation carriers, and have symptoms of FTD:
- The study will last 6 months, including 13 visits and 1 overnight visit ((drug will be delivered by intravenous infusion at the clinical site and each volunteer participant will only have one overnight stay, the day of the infusion)
- Two lumbar punctures, plus blood draws and ECG, will be required over the course of the study
- Travel will be reimbursed for the person diagnosed and their caregiver, as approved by the local site IRB
The lead investigator for the study is Bradley Boeve, MD, Mayo Clinic, Rochester MN.
For more information, please contact the investigator site closest to your location. The list of participating centers can be found here.
The TANGLES research study is being conducted at Washington University School of Medicine in St. Louis. The purpose of this study is to examine how the tau protein is made, transported and cleared in the human body. Tau forms tangles in the brain found in several neurological conditions.
Understanding of these processes is important in designing treatments and diagnostic tools to target this protein.
You may be eligible to participate if you are:
- Diagnosed with progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), or have a family history of FTD with the MAPT gene mutation
- Not taking anticoagulant medications
- Are at least 18 years old
- Able to take food and drink by mouth safely
Study participation lasts for 4 months and includes:
- 6 study visits (including 1 overnight visit)
- Intravenous (IV) infusion and blood draws
- Lumbar punctures (spinal taps)
Participants will be reimbursed up to $1200 for time and effort and travel expenses will be covered for the participant and family member.
Additional information from AFTD:
Each participant, accompanied by a care partner, will make six visits to the study site (Washington University in St. Louis) over the four-month study period. The first visit will require an overnight stay and will involve an intravenous infusion and blood draws. During each of the five subsequent visits, participants will undergo a lumbar puncture and have blood drawn.
Travel expenses for all visits, including flights, hotels, and ground transportation, will be covered for both the participant and care partner. The study team can assist participants with travel arrangements or transport needs such as wheelchairs.
Contact: Melody Li | 314-273-6062, [email protected]
Language in Primary Progressive Aphasia
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: Christina Coventry, MS, RN | 312-908-9681, [email protected]
Communication Bridge: A Person-Centered Internet-Based Intervention for Individuals With Primary Progressive Aphasia
The Communication Bridge study is an internet-based, speech therapy intervention for individuals with Primary Progressive Aphasia and their Communication Partner. A Communication Partner can be a spouse, relative, or close friend that will participate in the study along with the individual with PPA. The goal of the study is to understand how speech-language therapy affects communication abilities in people living with PPA. All study visits take place over the Internet in your home. We will provide you with a computer for the length of the study. We will connect through a video-chat program on the computer. The study lasts about one year. You will complete 5 evaluations with a licensed speech-language therapist, 15 one-hour speech therapy sessions with a licensed speech-language therapist, and home exercises on the computer we provide you. This study accepts persons all over the country, but they do have to be in the mild impairment stage of PPA, have a communication partner willing to participate, and sufficient internet connection.
Additional information from AFTD:
Participants with a diagnosis of PPA and their actively engaged care partners will be involved in the study for 12 months. There are no costs to participate in this study and compensation will be provided.
Learn more at clinicaltrials.gov.
Other recent studies of note
Low-Dose Lithium for the Treatment of Behavioral Symptoms of FTD
A study sponsored by Columbia University in collaboration with the Alzheimer’s Drug Discovery Foundation is seeking persons diagnosed with behavioral variant FTD, semantic variant primary progressive aphasia (PPA), or agrammatic, non-fluent PPA with behavioral symptoms, for a study to test the use of a drug to treat behavioral symptoms in FTD. The study, which will run over approximately 12 weeks, is recruiting volunteer participants at the Irving Institute at Columbia University Medical Center. A care partner (family member) will be required to provide information about the patient during interviews. The study will cover transportation costs as well as an additional stipend per participant. For more information, contact Hannah Silverman at: [email protected] or by calling 212-305-6284.
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.
- ARTFL –Advancing Research and Treatment of Frontotemporal Lobar Degeneration (ARTFL) is a natural-history study of FTD, open to anyone with an FTD disorder. ARTFL is funded by the NIH and is part of the Rare Diseases Clinical Research Network.
- LEFFTDS – The Longitudinal Evaluation of Familial Frontotemporal Dementia Subjects (LEFFTDS) conducts longitudinal studies of individuals who have mutations in the three genes most commonly affected in FTD: MAPT, GRN, or C9orf72. A primary goal of LEFFTDS is to identify the most robust and reliable methods to track disease progression in familial FTD so that disease-modifying therapeutic trials can be designed appropriately.
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.