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Research
Introduction
MAC Research
ADRC Research
Autopsy Program
Healthy Volunteering
Investigator Requests
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Frontotemporal Dementia: Genes, Images and Emotions
| Study Director |
Bruce Miller, MD |
| Sponsor |
National Institute on Aging |
| Recruiting? |
Yes |
| Official Study Title |
Frontotemporal Dementia: Genes, Images and Emotions |
| Conditions Studied |
Frontotempora Dementia (FTD)
Semantic Dementia (SD)
Primary Progressive Aphasia (PPA)
Frontotemporal Dementia with Amyotrophic Lateral Sclerosis (FTD-ALS)
Corticobasal Degeneration (CBD)
Progressive Supranuclear Palsy (PSP)
Alzheimer's Disease (AD)
Amyotrophic Lateral Sclerosis (ALS)
Healthy Aging |
| Purpose |
The purpose of this study is to help understand the
clinical, genetic, imaging, emotional and diagnostic
features of frontotemporal lobar degeneration (FTLD),
also referred to as frontotemporal dementia or Pick's
disease. The study will collect longitudinal clinical,
imaging, behavioral and autopsy data to be analyzed
with the goal of improving clinical care for patients
with FTLD. |
| Eligibility |
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| Inclusion Criteria |
Participants must be between the ages of 35 and 80 and meet
criteria for either the FTLD, PSP, CBD, AD, ALS or healthy aging group. Participants will need
a reliable study partner who has frequent contact with the participant, is available to provide
inforamtion about the participant, and who can accompany the participant to research visits as
needed. Participants must be willing and able to have brain MRIs through the course of the
study and have an MMSE score of 15 or greater at time of screening. Anyone not meeting these
criteria will need to be approved by the Study Director. |
| Exclusion Criteria |
The exclusion criteria include:
- A history of Korsakoff encephalopathy, alcohol abuse or dependence within 5 years
of the onset of dementia, substance abuse, head trauma with a loss of consciousness
greater than 30 minutes, brain tumor, multiple sclerosis, epilepsy, Parkinson's disease,
communicating or non-communicating hydrocepalus, schizophrenia, bipolar affective disorder,
intracerebral hemmorrhage
- B12 deficiency, hypothyroidism, HIV positive, renal failure, liver failure, repiratory
failure requiring oxygen, dementia due to a condition other than those described above,
cerebral infarct, large white matter lesions, significant systemic medical illness. Current
medication likely to affect CNS functions: benzodiazepines more than three times weekly, no
diazepam or triazolam but other short-acting benzodiazepines are fine; no amitriptyline or
doxepin, SSRIs and other tricyclics are fine; no lithium; no neuroleptics in the
phenothiazine or haloperidol families; no narcotics, codeine is fine but cannot be taken
for 24 hours prior to cognitive testing; no anticonvulsants outside therapuetic ranges; and
no antihistamines taken more than three times weekly, cannot be taken for 24 hours prior to
cognitive testing.
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| What is Involved? |
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| Testing |
Neurological
and physical examinations; interivew with study partner;
MRIs; cognitive testing; detailed family history; blood
specimen collection for genetic testing and cell line
gerneration; behavioral, emotional, and personality
testing; questionnaires for participant and study partner;
pre-conset to obtain a brain autopsy. Participants
will be asked to participate in additonal studies affiliated
with this project. |
| Frequency of Visits |
Depending
on the individual, there will be 4 to 6 visits over a
three month period of time, each year for up to five
years. Participants may choose to participate as an inpatient,
staying in Moffitt Hospital in the General Clincal Research
Center, and compelte the visits in one week or as an
outpatient and spread the visits out over three months. |
| Contact Information |
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| Coordinator |
Robin Ketelle RN, MS |
| Phone |
(415) 514-2058 |
| Materials Needed Prior to Evaluation |
MRI scan and medical records |
| Costs |
There are no costs associated with the evaluations that happen as
part of this study. For those who choose to stay in the hospital, there are no costs associated
with the stay. Parking in the Millberry garage will be reimbursed. Participants are responsible
for their travel and hotel, should they choose to stay in one. |
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