The study is designed to collect data regarding the clinical course and outcome of patients
suffering from memory disorders. Visits are charged to the individual's insurance inclusive
of Medicare. Patients benefit from expert evaluation and treatment recommendations.
Participants may be eligible for participation in experimental treatments in the future.
The purpose of this long-term, observational patient outcome registry at Cedars-Sinai
Medical Center is to collect information about subjects with memory disorders from their
clinical care and treatment outcome(s). It plans to examine predictors of treatment outcomes
among those individuals who enroll.
Currently, there are no curative treatments for memory disorders, and this study hopes to
collect information on the disorders. Over the next 6 years, this registry expects to
recruit 600 adults over the age of 18 who are concerned that they may have a memory problem,
or who have been diagnosed with a memory problem such as occurs in Age Associated Memory
Impairment, Alzheimer's disease, Vascular Dementia, Mixed Dementia, Dementia with Lewy
Bodies, Frontotemporal Dementia, Parkinson's disease, or Huntington's disease.
The Memory Disorders Program owes its existence to patients agreeing to have their clinical
information kept in a database for quality control and research purposes. This data will
include physical and cognitive exams, laboratory tests and scans as well as information
about their medications. Many potential subjects will call in with interest in our Memory
Disorders Program, and a preliminary screening process will be performed over the phone. All
potential subjects would be sent an informed consent document to look at before reviewing it
with the study coordinator. Once they arrive at their initial visit, the research registry
and its optional substudy (a postmortem exam available to all Cedars-Sinai patients) would
be discussed with unlimited time for questions. If the subject, or his/ her surrogate
decision maker (legally authorized representative, or LAR), consents to research, then his/
her clinical test results and (if applicable) the results of the postmortem exam will be
kept on file for research purposes. If the subject/LAR consents, he/ she may also be
contacted about any future research studies for which he/ she may be eligible. Patients who
elect not to participate in this research will not be contacted for future studies. However,
for those who are found to be ineligible and would like to learn about future studies as
they arise, the Memory Disorders ICF offers them the option to be contacted in the future as
new studies become available to them.
This research study will involve no collaborations, inside or outside of the Cedars-Sinai
Medical Center. However, the subject's clinical care will involve collaborations with other
departments within Cedars-Sinai Medical Center.
This registry will not involve any research-related costs, or any remunerative incentive.
- 18 years of age and older
- Capable of providing informed consent and having a legal representative able to
consent out of concern for future competency to consent (as defined by a Mini Mental
State Exam score of <24) or capable of assent but incapable of giving competent
informed consent, but with a legal representative able to provide informed consent
- Subject or family voices concern about their memory or possess knowledge that they
have been diagnosed with a memory disorder such as Age Associated memory Impairment,
Alzheimer's disease, Parkinson disease, Huntington disease, vascular dementia, mixed
dementia, dementia with Lewy Bodies, or frontotemporal dementia
- Children (less than 18 years of age)