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.