25 Aug 2017, 8:12 am
Hi, everyone. 
I'm an old-time member of WP, although I used to be known under the handle, "Sophist," back in the day. I'm also a researcher studying the autism spectrum.
I've gotten permission from Alex and the admins/mods to post an advertisement for a survey I'm conducting, looking at medical issues that may occur in folks like us on the spectrum. This is sort of a continuation and extension of a survey study I posted about earlier. Right now that work is under review and I'm hoping to impart the results to WP members in the coming months. 
For this new survey, my team and I are looking for adults aged 25 years or older (or the legal guardians of adults who fit those criteria) to take part in an online survey study investigating a range of symptoms in the autism spectrum, Ehlers-Danlos Syndrome, and the general population. We are interested in any adults aged 25 years or older from any country who are willing to take part. You don't need to have an autism spectrum diagnosis nor do you need to even be on the spectrum, since we want to compare these issues across groups of people.
This study is IRB-approved through the Greenville Health System (GHS) in South Carolina. Its purpose is to better understand a range of some of the medical conditions that may affect people with an Autism Spectrum Condition and/or Ehlers-Danlos Syndrome and how they may differ from the general population.
If you are an adult 25 years of age or older and would like to take part in this study, please follow the link below to read more and get started:
http://www.surveygizmo.com/s3/3420093/E ... -Syndromes
If you have any questions, please email me, Dr. Emily Casanova, at [email protected].
There are minimal risks involved by taking part in this study and you will not be compensated for your time. However, you will be helping us to better understand some of the medical issues that affect these two subpopulations, which may ultimately lead to improved treatment interventions and better quality of life for those on the autism and Ehlers-Danlos spectrums.
Thanks in advance!
Emily L. Casanova, PhD
Dept. Biomedical Sciences
University of South Carolina Greenville Medical School
Greenville Health System
Last edited by flibbit on 25 Aug 2017, 8:26 am, edited 1 time in total.
25 Aug 2017, 8:26 am
By the way, if anyone has any questions you're more than welcome to ask them here too. I'll be following the thread closely.
26 Aug 2017, 9:11 pm
We're getting good numbers of participants so far. If you're interested in participating and still haven't, please consider doing so.
StampySquiddyFan
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26 Aug 2017, 9:12 pm
I wish I could! 
26 Aug 2017, 10:12 pm
The survey felt very much like the survey that you have to do before donating blood, but much longer.
StampySquiddyFan
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26 Aug 2017, 10:14 pm
Oh, I really wish I could take it
! What sort of questions did they ask?
26 Aug 2017, 10:18 pm
Oh, I really wish I could take it
! What sort of questions did they ask?Mostly questions along the lines of "Have you ever had this medicical condition", "Are you aware of this condition in your family", etc.
Everything from Acne to headaches to Alzheimer's disease.
StampySquiddyFan
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26 Aug 2017, 10:19 pm
Oh, I really wish I could take it
! What sort of questions did they ask?Things along the lines of "Have you ever had this medicical condition", "Are you aware of this condition in your family", etc.
Everything from Acne to headaches to Alzheimer's disease.
Oh that sounds kind of fun!
(if you are interested in that type of thing- like weirdo me!)
27 Aug 2017, 2:36 pm
Are you under 25? Sorry about that! We're asking about some hormone issues, which sometimes aren't diagnosed until in the 20s, which is why we didn't use the 18+ cutoff instead.
27 Aug 2017, 2:37 pm
Haha, probably! (Although I have a blood draw phobia, so I honestly wouldn't know.
)
StampySquiddyFan
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27 Aug 2017, 2:38 pm
Are you under 25? Sorry about that! We're asking about some hormone issues, which sometimes aren't diagnosed until in the 20s, which is why we didn't use the 18+ cutoff instead.
Yes, I'm only 13
. I wouldn't even be able to take it if I was 18 !
27 Aug 2017, 3:07 pm
27 Aug 2017, 4:40 pm
Are you under 25? Sorry about that! We're asking about some hormone issues, which sometimes aren't diagnosed until in the 20s, which is why we didn't use the 18+ cutoff instead.
Yes, I'm only 13
. I wouldn't even be able to take it if I was 18 !Ack! Ah well. I'll be posting the article when it (hopefully) gets published in this thread, so at least you can read it.
27 Aug 2017, 4:41 pm
Awesome. Thanks very much, Voxish!
StampySquiddyFan
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Age: 21
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27 Aug 2017, 4:49 pm
Are you under 25? Sorry about that! We're asking about some hormone issues, which sometimes aren't diagnosed until in the 20s, which is why we didn't use the 18+ cutoff instead.
Yes, I'm only 13
. I wouldn't even be able to take it if I was 18 !Ack! Ah well. I'll be posting the article when it (hopefully) gets published in this thread, so at least you can read it.
Yay! Thank you
. It should be very interesting.
27 Aug 2017, 6:20 pm
Are you under 25? Sorry about that! We're asking about some hormone issues, which sometimes aren't diagnosed until in the 20s, which is why we didn't use the 18+ cutoff instead.
Yes, I'm only 13
. I wouldn't even be able to take it if I was 18 !Ack! Ah well. I'll be posting the article when it (hopefully) gets published in this thread, so at least you can read it.
Yay! Thank you
. It should be very interesting.I hope so! I'm planning on keeping the survey open probably until December-ish, so we can get large numbers of people taking part. But that means it may not be in print until next summer.
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