SUBMIT your abstract or manuscript to NACC for the required review
For questions not addressed here, contact NACC (email@example.com or 206-543-8637).
If a subject is getting a follow-up visit packet for the UDS and is getting an FTLD Module evaluation for the first time, which FTLD packet should we use?
You should administer the FTLD Initial Visit Packet to any subject getting his/her first FTLD Module evaluation, even if that participant is simultaneously being given the UDS Follow-up Visit Packet.
If a subject is getting an FTLD initial visit packet and a UDS follow-up visit packet, should
the "VISIT #" we fill in at the top of each form be different for the two packets?
No, "Visit #" (an arbitrary value assigned by the Center) MUST BE THE SAME for any two packets administered during the same visit (even if the visit is spread over two days, as described in the introduction to the FTLD Coding Guidebook under "A Note on the Timing of the FTLD Evaluation").
Can Centers administer only the FTLD Module, or do they have to administer the UDS as well?
The FTLD module is a supplement to the UDS. In order to submit data to NACC for the FTLD Module, Centers must administer the entire UDS along with the FTLD Module. For non-ADC, non-Clinical Core subjects, and all those from non-ADC studies whose data will not be submitted to NACC, Centers are welcome to administer the FTLD Module, along with their own local evaluation. However, for standardization and comparability of data, we recommend that they also evaluate these subjects with the UDS.
Approximately how long will it take for a subject to complete the entire FTLD module?
For planning purposes, Centers should budget about 1 hour for the entire FTLD Module, which includes the history and neurological examination plus neuropsychological testing of the subject and simultaneous completion of questionnaires by the informant. The neuropsychological tests themselves take from 20 to 40 minutes, depending on the subject’s level of impairment.
What is the best place to find information on how to administer the FTLD Module?
The FTLD Coding Guidebook should be your primary resource. The Guidebook contains detailed, annotated explanations of each form on an item-level basis, with instructions, operational definitions, and references. In addition, the Instructions for the Neuropsychological Battery provide detailed scoring instructions and test administration guidelines for the instruments in the neuropsychological battery.
Are there videos illustrating the various speech deficits in aphasic patients?
Yes. Follow the instructions here to access a video tutorial provided by Dr. M.-Marsel Mesulam.
What other training materials are available?
Presentations are posted here from NACC’s December 2011 training meeting on the FTLD Module.
If a neuropsychological test in the FTLD Module (e.g., Verbal Fluency) is already being given at our Center, can we omit it as part of our FTLD administration?
No. In order to standardize test administration among Centers, the FTLD Neuropsychological Battery must be administered in its entirety after the Uniform Data Set (UDS) neuropsychological battery and either before or after the administration of other tests commonly used by the Center. So if Verbal Fluency, for example, is already given, it needs to be administered again following the instructions laid out in the FTLD Module and in the order in which the test appears in the FTLD Module.
Are norms available for the neuropsychological tests?
Norms for a number of the questionnaires are currently being developed.