Research study I might be eligible for

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I contacted the Center for Excellence in Autism research at the Univeristy of Pittsburgh. After explaining my rather unique and complex situation to the women I spoke with, she told me I may be eligible to participate in the study. She is going to give my information to the director and I should be getting a call from them on Monday.

While I have not been formally Dx-ed with an autistic spectrum disorder, I do fit the general profile of individuals with NVLD. Since NVLD is not an official Dx, I have been Dx-ed with LD-NOS on three of the five neuropsych evals i've taken and Mathematics Disorder on another. I received no LD Dx on the most recent neuropsych eval I had and was only Dx-ed on Axis-I with Dysthymic Disorder on that eval. I explained all this to the women I spoke to and she said I still might be eligible in spite of the fact that I lack an ASD Dx. I probably won't be able to participate in the study of people WITH autism, but they are also looking for controls without an ASD Dx and she said I very well may qualify for that one. She sounded very interested and confident that I could participate somehow. I don't want to sound naive about all this and I know i'm engaging in alot of wishful thinking since i'd love nothing more than to find a research study (which includes an MRI or any other Frankensteinish investigations they can perform on my brain ) i'd be eligible for. Still.....it never hurts to inquire and it's worth a shot especially considering they ARE looking for participants without an official ASD Dx.


Anyway.....if anyone else is interested in participating in this study....here's the link.

http://www.wpic.pitt.edu/research/cefar ... autism.htm



Also....if anyone knows of any other research studies in the USA looking for adult participants with learning disabilities or neuropsychological disorders of anykind, PLEASE let me know. If there are any studies involving memory (or memory disorders which aren't age-related) i'd be interested in those as well.


Please keep your collective fingers crossed for me......I would literally give a few of my own to participate in this study!! !


I grew up in the Pittsburgh area and much of my immediate family lives there so i'd have the extra-added bonus of not having to worry about hotel expenses, meals, etc....

Also...does anyone know of any specific places (on the internet or elsewhere) I could look for research studies I might be eligible for?

Aside from the one in question (and another WP poster recently provided the link for this one)....i'm not having much luck at all and i've been googling my brains out here.

Ooooh, interesting! Tell us how it goes, OK?

Thanks!! !

Here I was expecting you to rain on my parade


That is....I was expecting you, in particular, (since you are one of the most knowledgeable and active people on WP when it comes to all things ASD/brain-related) to tell me I have little chance of getting accepted.


I'm fully aware of that, but desperate times call for desperate measures and I have nothing to lose by inquiring.

I know neuroimaging of any sort probably can't tell me much about the LEARNING problems I have. But I DO feel they might be able to tell something about the MEMORY problems I strongly believe I have. For me, these issues (assuming I haven't somehow exaggerated or imagined them) are likely far more debilitating in terms of academic/vocational, etc.... potential than the actual and likely NVLD-related problems with math, visual-spatial reasoning, etc....

I'm largely basing this belief on the article i've posted about epileptics who complain of problems with memory and yet score within normal ranges on the standard neuropsychological tests of memory.


Just in case you missed it....i'll post some revelant paragraphs from the article again:






Brain, Vol. 123, No. 3, 472-483, March 2000
© 2000 Oxford University Press

--------------------------------------------------------------------------------

Invited review


Accelerated forgetting in patients with epilepsy
Evidence for an impairment in memory consolidation
R. V. Blake1,2, S. J. Wroe3, E. K. Breen2 and R. A. McCarthy1
1 Department of Experimental Psychology, University of Cambridge, 2 Department of Neuropsychology, Addenbrooke's Hospital, 3 Department of Clinical Neurology, Ipswich Hospital, Ipswich and Department of Neurology, Addenbrooke's Hospital, Cambridge, UK


Correspondence to: Dr Rosaleen A. McCarthy, Department of Experimental Psychology, Downing Street, Cambridge CB2 3EB, UK


Abstract
Top
Abstract
Introduction
Methods
Results
Discussion
References


Patients with epilepsy frequently complain of memory difficulties yet perform normally on standard neuropsychological tests of memory. It has been suggested that this may be due to an impairment of very long-term memory consolidation processes, beyond those normally assessed in the neuropsychological clinic. We carried out a prospective study of verbal memory over a long-term retention interval of 8 weeks in patients with epilepsy and in controls. Results were compared with performance on conventional tests of memory. Despite normal learning and retention over 30 min, patients with epileptic foci in the left temporal lobe performed disproportionately poorly on the long-term test compared with both patients with epileptic foci in the right temporal lobe and controls. Our findings provide evidence for an extended period of memory consolidation and point to the critical region for this process, at least for verbal material, in the left temporal lobe. The implications of our findings for clinical assessment and therapeutic management of patients with epilepsy are discussed.

epilepsy; memory; consolidation; long-term; verbal

HAD = Hospital Anxiety and Depression Scale; NART = National Adult Reading Test; TEA = transient epileptic amnesia; WAIS-R = Wechsler Adult Intelligence Scale—Revised; WCST = Wisconsin Card Sort Test; WMS-R = Wechsler Memory Scale—Revised


Introduction
Top
Abstract
Introduction
Methods
Results
Discussion
References


Patients with epilepsy frequently complain of memory problems that are often undetected by conventional memory tests. In this paper we have investigated beyond normal retention intervals to prospectively evaluate long-term memory consolidation processes in patients with epilepsy.

Traditionally, theories of human memory have focused on a limited range of time intervals. Information that is assessed after a few seconds is thought to be held within short-term or working memory systems; information that has been stored for longer than a few minutes has usually been assumed to be represented within long-term memory. The establishment of memory within long-term storage is thought to be mediated via some form of consolidation process. While such consolidation may not be complete after a few minutes (and indeed may continue for weeks, months or years) it is often assumed that its general efficacy can be evaluated after relatively brief delays. Thus, clinical tests of memory have tended to focus on the short-term/long-term distinction, measuring memory either after seconds or minutes (e.g. Wechsler, 1987). Comparatively little is known about long-term memory beyond this relatively narrow interval (in the case of standard neuropsychological assessments extending to a mere 30 min), and it is often assumed that there is little to know. This may be an unwarranted assumption.



Here's the MRI data on several of the patients studied:


Analysis 3: left- versus right-temporal patients
The analysis was repeated comparing left and right-temporal patients only. Of the left-temporal group, MRI data were available for eight of the nine patients. In five cases the MRI was normal, in one case there was hippocampal sclerosis, in one case there was an arachnoid cyst and in one case there was asymmetry of the temporal horns. In the right-temporal group, MRI revealed evidence of hippocampal sclerosis in four patients and in one case the MRI was normal. The groups did not differ significantly on clinical or standardized neuropsychological variables (Table 5). In particular, there were no significant group differences on standardized verbal and non-verbal memory measures.

http://brain.oxfordjournals.org/cgi/con ... /123/3/472



While I don't have epilepsy....I very well may have some other neurological impairments which affect my memory. If so.....I have no idea whether they could be determined by an MRI or any other neuroimaging tool. Nonetheless, i'd say some neuroimaging would be worthwhile in my case considering what is said in this article about the limitations of the conventional neuropsychological memory tests as well as what the MRI data on these patients DID indicate.

I have to say it's amazing to me that psychologists have made the "unwarranted assumption" this article is referring to.


For many years now prior to reading this article, I have believed that, often enough, the neuropsych memory tests used in the typical clinical setting were of significantly limited utility in terms of what they can determine about an individual's long-term memory. My belief here was precisely based on the narrow time intervals involved in these tests. It's always seemed absurd to me that psychologists believe they can know everything there is to know about one's LONG TERM memory based on a 30 minute delay at most.

Congrats! Hope you learn something helpful.

What area of the US are you looking for?

Thanks!! !.... i'll find out if i'm eligible next week.

I would prefer a study somewhere in Florida/the southeast or western PA.

But I would likely be able to travel anywhere in the US for the right study.

Most teaching hospitals have research studys. Look up what hospitals are around. I know that the University Of Colorado Hospital has a autism study

I hope that your study goes well, and I'd also like to know how it went, afterwards.

I believe I tried out for that study in 2007 (or was it a different one?), and was rejected due to not having been formally diagnosed.

Thanks Cockney!! !


I haven't been approved yet, but I will most likely be hearing from the director of the study on Monday or some other day this week at the latest.

I'm pretty sure this study at Pitt has been going on since then.

Needless to say...I have no idea if it's the same study you tried out for or not.


If anything....I think I might have chance of being accepted as participant in the control group since I lack a formal ASD Dx too.

Yeah, it was a long time ago, and I have a terrible memory as it is.


I hope you are accepted.

Thanks!! !.....i'm hoping for the best but honestly expecting the worst. Without an autism Dx and considering I already told them I was "Dx-ed" with NLD (quotation marks are due to the fact that NLD isn't a formal Dx) and schizotypal PD, I doubt i'll even be accepted as a control. I would suspect they're looking for "healthy controls" only and a person with a Dx-ed learning disability and PD may not qualify as a "healthy control".

The women I spoke with really couldn't tell me anything in that regard, but I felt a full disclosure was necessary on my part. So we'll see what the director of the study has to say next week.

Like I already said in this thread and many of my other WP posts, my own terrible memory is the biggest reason I hope to get accepted.


In spite of all the neuropsych testing i've undergone....i've spent my entire life living with something that I, and no one else, understands.

Neuroimagining may at last provide me with some answers and until if/when I can afford it on my own, a research study like this one is my only access to it.

There are several studies going on right now. You have to go through a lot of testing (IQ, etc) before you're eligible for any study. For the brain imaging study, your IQ can't be too low or too high and you can't have any other medical conditions (I got ousted because I have type I diabetes). I'm in the Perspectives program through that group, though, and it's 18 months of social/cognitive therapy (computers and in groups) and I get paid. It's great!

How can I contact the studies you're referring to? Do all of them require an official ASD diagnosis?...., because I don't have one. I was only Dx-ed with LD-NOS or Mathematics Disorder and told I meet the general characterisitcs of NVLD. What institutions are conducting these studies and where are they located? I would greatly appreciate some further information here. My IQ scores are neither too high (I think...though my FSIQ on the most recent WAIS I had was 143. My scores on all the WAIS tests I had were no where near that high) or too low. I don't have any other significant medical conditions...not that i'm aware of at least


I would really love some more details from you. I don't care if I get paid or not. I want some brain imaging more than anything else since i've had five *on-paper* neuropsych evals in my life and don't see how one more will provide me with any further insight.

I might be able to travel out of state for the right study. I live in Florida and as far as I know, there's no research studies i'd be eligible for around here at any universities, teaching hospitals, etc....

Perhaps if I wanted to participate in a study pertaining to depression or something...but I don't need to know anything more about my depression.

So please give me some further info here if you can....i'd be forever indebted to you