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 Survey for CBS/CBD, PSP, and other FTD-related disorders 
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Survey for CBS/CBD, PSP, and other FTD-related disorders
I know there are a few here whose family members have had CBD diagnoses (Lynn), PSP diagnoses, and other FTD-related diagnoses, such as autopsy-confirmed FTLD-TDP. And there are a couple of people here with LBD who also have bvFTD diagnoses.

The AFTD (which now stands for Association for Frontotemporal Degeneration) is encouraging caregivers -- current and former -- and family members to complete a survey on FTD genetics. CBS/CBD and PSP are considered FTD-related conditions. (The FTD umbrella includes bvFTD, FTDP-17, FTLD-TDP, CBS/CBD, PNFA, SD, PSP, Pick's, and PPA.)

To be eligible to complete the survey, you must be the spouse/partner, parent, child, or sibling of an individual (living or deceased) who has been (or was) diagnosed with FTD or an FTD-related condition.

To confirm, former caregivers may participate. Questions in the survey are phrased in such a way that it includes the possibility that family members are deceased.

The survey is conducted by the University of Pennsylvania Center for Neurodegenerative Disease Research. UPenn wants to learn more about caregivers' knowledge of FTD genetics and genetic testing. The information will be used to develop educational materials for patients and families. This study is being sponsored by AFTD and the resulting educational materials will be made available through the AFTD website.

The survey takes 20-30 minutes to complete online. The survey does not collect any personal information that could be used to identify participants. You can find the survey here:
http://www.surveymonkey.com/s/FTD

If you have any questions, you can find contact information for the two UPenn researchers (genetic counselors) in a letter they wrote about the study posted to The AFTD website here:
http://www.theaftd.org/wp-content/uploa ... -genetics-\
survey.pdf

Robin


Mon Apr 04, 2011 7:09 pm
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Joined: Wed Dec 30, 2009 1:46 pm
Posts: 3213
Location: WA
Post Re: Survey for CBS/CBD, PSP, and other FTD-related disorders
Robin, my next-door neighbor's husband is in late stage, diagnosed FTD. May I e-mail her the link?

_________________
Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Mon Apr 04, 2011 7:48 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Survey for CBS/CBD, PSP, and other FTD-related disorders
Thanks Robin. Since my dad had an alphabet soup of possible diagnoses, I will fill out their survey and hopefully that will be helpful to researchers. Thanks for posting.
I also have a friend whose MIL just died from PSP. Do you think they'd want data about her too? Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Apr 04, 2011 8:52 pm
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Joined: Fri Aug 11, 2006 1:46 pm
Posts: 4811
Location: SF Bay Area (Northern CA)
Post Re: Survey for CBS/CBD, PSP, and other FTD-related disorders
Yes to both mockturtle and Lynn! Any and all entries are welcome!


Mon Apr 04, 2011 10:04 pm
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Survey for CBS/CBD, PSP, and other FTD-related disorders
FYI - anyone interested in taking this survey, it took me less than 15 min. I had to really think back (a long way I might add) about what I learned about genetics in HS and college! Good brain exercise! Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Mon Apr 04, 2011 10:41 pm
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