ARTFL LEFFTDS Longitudinal Frontotemporal Lobar Degeneration (ALLFTD)
What is the purpose of this study?
The ALLFTD study is a large research project taking place at many medical centers. It follows people over time to better understand how frontotemporal lobar degeneration (FTLD) develops and changes. Researchers compare what happens in people with FTLD to what happens in normal aging. They are especially interested in finding early warning signs, such as changes in brain scans or blood tests, that may appear years, even decades, before symptoms begin. The ultimate goal is to use this knowledge to develop new treatments and to learn when delivering those treatments would work best.
Who is a qualifying participant?
- Adults age 18 or older.
- Have a reliable study partner (family member or friend) who can provide information about your memory, thinking, behavior, and ability to manage activities of daily living.
- Those with a diagnosis (or symptoms suggestive) of FTLD; OR those who are cognitively normal with a family history of FTLD or with a blood relative who has a known genetic mutation associated with FTLD (e.g., MAPT, GRN, C9orf72).
What are we asking of you in this study?
We ask for an annual visit. Participation is ongoing as long as you wish to participate or until the study closes. During a study visit, we will ask for:
- Medical History: Detailed questions about your medical history, medications, family history, social history, and health habits.
- Vital Signs: Measures of blood pressure, temperature, pulse, height, weight, waist and hip circumference.
- Bloodwork: Blood is drawn to collect important health information and risk factors. (This study does not provide lab results for this bloodwork)
- Cognitive Testing: Written tests and questions will be administered by an examiner to evaluate memory and thinking.
- Neurological Evaluation: A doctor will conduct a neurological/physical exam.
- Imaging: You will receive an MRI of the brain.
- Optional Tests: Lumbar puncture (For more information, click here)
- Click here to learn more about this study