Has anyone participated in LEFFTDS?

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Lipreng

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Hi,
I’m traveling to Philadelphia to participate in LEFFTDS in a few weeks. I’m wondering if others could share their experience with this study. I’m interested in hearing what the experience was like..the positives & negatives. I will be getting genetic testing since I will be part of the disclosure group. Thanks.
 

Nikki J

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I have not but know people who have though not at that site

Generally people find the studies rewarding and the study personnel grateful for your participation.

Is this the study with the MRI and long form cognitive testing? Study mris are usually long 90 minutes or more. I like it best when they talk a lot telling you this scsn will be 10 minutes and 20 minutes until we are done

Long form cognitive testing is often tiring even when you are doing fine

Are there other procedures in the study?

Thanks for doing it
 

Lipreng

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Hey Nikki,

Thanks for replying :)
The 2 day study consists of 2 MRI’s, lots of cognitive testing, blood tests, psych testing, genetic testing, and an optional lumbar puncture.
 

Nikki J

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The lp is very valuable. If you have the option of being in a massage chair which more centers are using it is easiest. When I was asymptomatic the c9 specialist told me my spinal fluid was as vsluable as gold for researchers. They actually had an a list that automatically got a bit but anyone else had to apply specially.
 

SpeedyMarie

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Hi Lipreng,

I have done both the ARTFUL (sp) and the LEFFTDS. At UPENN it’s a well run program with good people. By the way it’s a lot cheaper to airb&b there.

The first day we meet with the researcher then meet the Doctor and nurse exam and LP if you choose to do that. It’s not bad. An hour laying down you get blood drawn then lunch then the first MRI in another building they walk you through it. MRI’a are loud they give you ear plugs. I think I did neuropsychological testing after that.Then your done. Best to Uber back to where ever your staying after that.
The next morning a little later. If you chose to do the genetic side. I did, I have strong family no one knew genetic results history so I was the first in the family and qualified more family members for the study, sadly. We met with a Psychiatrist and Genetic researcher. I appreciate that they really cared and wanted to make sure your okay to do this part. I signed consents it’s all Anonymous. You can chose to get your results or not. Then another much smaller blood draw lunch and more neuropsych testing, then a functional MRI it’s longer than the first and you watch images and have a button to push. Being in the MRI isn’t bad they put a clear mask Darth Vadarish on you to keep you from moving not tight my mind kept wanting to make music out the the sounds of the magnets. Afterwards your free... results in about two weeks for the blood test for C9orf72, if you don’t carry it they offer to send on order to a lab that only charges $250 for the others rare genetic mutations.
 
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