Cunningham Test

[harmony]

Cunningham test is now $400? Wow, I thought it was only $200.

The office is closed till mid January- do any of you know if they accept less than asking amount???

[ajcire]

Cunningham test is now $400? Wow, I thought it was only $200.

The office is closed till mid January- do any of you know if they accept less than asking amount???

 

 

You can certainly ask. I contacted them recently and was told of the increase as well. They told me at this time they were unable to accept participants without payment. I totally understand this as they just don't have the funding. I didn't ask about if they would take less.

[nevergiveup]

I heard this goes into funding for future pandas studies, I hope this is still the case.

[thereishope]

That's a shame. At least they are still runnng the test, but the participants will lower due to cost. Can you at least take it as a charitable donation on your taxes?

[Chemar]

DOUBLE???? the original price!

 

wow is all I can say!

[ajcire]

Yeah, I was really surprised when I got the email back with the current cost. She said her funding has basically run out. It seems like it shouldn't cost to participate in a research study that is really for the researchers but of course in this case this is equally as important for us as it is for the researchers.

 

It's frustrating but I still am so impressed with the kindness of the group involved in doing the study.

[Buster]

Hi folks,

 

Some of us had gotten together and provided funds to offset the cost of the tests for parents last year and that's what you were seeing. Those funds were meant to help carry over experiments/trial in hopes that research funding would come in for this year from NIMH. The new funds didn't come in and the bridging funds are largely exhausted. We really need NIMH to fund research here.

 

Buster

 

Cunningham test is now $400? Wow, I thought it was only $200.

The office is closed till mid January- do any of you know if they accept less than asking amount???

[sf_mom]

Thanks Buster that was extremely generous. I hope I can follow your lead in the future.

[pixiesmommy]

We've talked about this before, but I don't remember there being a concrete answer... is there an address for just donations?

[Chemar]

Buster, that was an amazingly generous act of kindness from those of you that did that to help other parents

 

I am curious as to why the research hasnt received funding? From what I have gathered, isnt this the most definitive "test" available for PANDAS? Is there any specific reason that NIMH is not providing the funds needed? or any other funding source?

[Buster]

We've talked about this before, but I don't remember there being a concrete answer... is there an address for just donations?

 

We posted here about donations:

http://www.latitudes.org/forums/index.php?...art=#entry40296

 

Buster

[Buster]

I am curious as to why the research hasnt received funding? From what I have gathered, isnt this the most definitive "test" available for PANDAS? Is there any specific reason that NIMH is not providing the funds needed? or any other funding source?

 

I think that is what every researcher wonders...

 

In 2009, $20B was spent by the National Institute of Health. Of that $2B was invested in research on mental health for 7338 grants for an average grant size of $217K.

• 175 grants were > $1M
  
• 795 grants were between 500K and $1M
  
• 4419 grants were between 100K and 500K
  
• and the remainder < $100K
  

Dr. Swedo had a 2009 grant of $200K. Of this only a small portion was available for funding researchers at Univ of Oklahoma. You'll see in the research grant summary below that the majority of the study is around the recruitment and testing of PANDAS children with riluzole. It is likely with so many requests for funding last year (and this year) and the relatively low diagnosis of PANDAS that they decided to only fund one study. Hard to say though. The inner workings of NIH and NIMH remain an enigma ...

 

Buster

 

Project Number: 1ZIAMH002666-17 Principal Investigator(s): SWEDO, SUSAN

Title: EVALUATION AND TREATMENT OF OBSESSIVE COMPULSIVE AND RELATED DISORDERS Awardee Organization:

 

There are two projects within this research portfolio. The first is a longitudinal study of children in the PANDAS subgroup (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) and the second is a clinical trial of riluzole - a glutamate antagonist with some preliminary evidence of benefit for children and adolescents with obsessive-compulsive disorder (OCD). A double-blind, placebo-controlled trial of riluzole is currently underway for children ages 7 - 17 years. During the reporting period, the mid-point of the study was reached and an interim data analysis revealed encouraging, but not yet significant, results. Further analyses revealed that the full cohort of 60 children will be required to reach statistical significance. Therefore, enrollment is ongoing and interested individuals are invited to learn more about the study at: http://clinicalstudies.info.nih.gov/detail...005-M-0225.html In some cases, childhood-onset OCD and tic disorders appear to arise as sequelae of common childhood infections, including Group A beta-hemolytic streptococcal (GABHS) infections. Children whose symptoms begin or exacerbate following GABHS infections may belong to a subgroup of neuropsychiatric disorders identified by the acronym PANDAS (for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). The PANDAS subgroup shares several common clinical characteristics and may share a common pathophysiology for their symptoms. The postulated etiology for the PANDAS subgroup is that specific strains of GABHS, in genetically susceptible individuals, elicit the production of cross-reactive antibodies which recognize antigens not only on the strep. cell wall, but also in the host brain tissue, eliciting obsessions, compulsions, tics and other neuropsychiatric symptoms. The cross-reactive antibodies have been shown to correlate with other anti-streptococcal antibodies and also with neuropsychiatric symptom severity, with highest titers seen in children acutely ill with Sydenham chorea or PANDAS symptomatology. A recent report by Yaddanapudi et al (Mol Psychiatry advance on-line publication, 11 Aug 2009; doi10.1038/mp.2009.77)demonstrated that passive transfer of these cross-reactive antibodies resulted in stereotypies and other neurologic symptoms in the recipient mice. This paper adds to the results of more than 15 years of research at the NIMH intramural program and elsewhere, demonstrating that: the PANDAS subgroup has a specific and identifiable symptom course (marked most notably by the acute, abrupt, overnight onset of symptoms ("zero to sixty in less than 24 hours"); the cross-reactive antibodies correlate with both GABHS infection status and neuropsychiatric symptom severity; prevention of GABHS infections through antibiotic prophylaxis results in prevention of neuropsychiatric symptom exacerbations; and, treatment of acutely ill children with immunomodulatory therapies (specifically, intravenous immunoglobulin (IVIG)or plasmapheresis) results in dramatic reductions in symptom severity. This line of research is unusual, in that it reversed the typical "bench to bedside" progression and took clinical observations and experiences into the laboratory in search of information about etiopathogenic mechanisms. The results proved exciting, as the cross-reactive antibodies identified antigenic targets in the CNS which provide new targets for therapeutic interventions. If novel therapies can be developed, it will have a tremendous public health impact, as 1 in 150 children suffers from OCD and many do not benefit from currently available treatments. During this reporting period, the Branch's research on PANDAS has focused on determining the temporal relationship between streptococcal infections and symptom onset and exacerbations. Children with recent-onset OCD were followed prospectively for up to two years, with clinical evaluations and serial serum samples. The temporal relationship between symptom exacerbations and streptococcal infections is being examined to determine whether or not membership in the PANDAS subgroup can be predicted at initial presentation. Final data analyses are being completed at the time of this writing, in collaboration with Dr. Tanya Murphy at Univ of South Florida. In addition, the samples from children with a PANDAS symptom course will be sent to Dr. Madeleine Cunningham (Univ Oklahoma) and Dr. Christie Kirvan (UC-Davis) for cross-reactive antibodies assays.

[momto2pandas]

I would still like to get the pharmaceutical industry to kick in here. I have some ideas for this that I'm starting to pursue. (I've spent most of my career heading up rheumatology clinical research programs in the industry, so have good contacts, etc.) If any of you science types are available to bounce around some ideas, message me and I'll let you know what I'm thinking. I'm no expert on the basic science of PANDAS at this point and would love to have some critical feedback re. my ideas.

 

 

I am curious as to why the research hasnt received funding? From what I have gathered, isnt this the most definitive "test" available for PANDAS? Is there any specific reason that NIMH is not providing the funds needed? or any other funding source?

 

I think that is what every researcher wonders...

 

In 2009, $20B was spent by the National Institute of Health. Of that $2B was invested in research on mental health for 7338 grants for an average grant size of $217K.

• 175 grants were > $1M
  
• 795 grants were between 500K and $1M
  
• 4419 grants were between 100K and 500K
  
• and the remainder < $100K
  

Dr. Swedo had a 2009 grant of $200K. Of this only a small portion was available for funding researchers at Univ of Oklahoma. You'll see in the research grant summary below that the majority of the study is around the recruitment and testing of PANDAS children with riluzole. It is likely with so many requests for funding last year and this year and the relatively low diagnosis of PANDAS that they decided to only fund one study. Hard to say though. The inner workings of NIH and NIMH remain an enigma ...

 

Buster

 

Project Number: 1ZIAMH002666-17 Principal Investigator(s): SWEDO, SUSAN

Title: EVALUATION AND TREATMENT OF OBSESSIVE COMPULSIVE AND RELATED DISORDERS Awardee Organization:

 

There are two projects within this research portfolio. The first is a longitudinal study of children in the PANDAS subgroup (Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections) and the second is a clinical trial of riluzole - a glutamate antagonist with some preliminary evidence of benefit for children and adolescents with obsessive-compulsive disorder (OCD). A double-blind, placebo-controlled trial of riluzole is currently underway for children ages 7 - 17 years. During the reporting period, the mid-point of the study was reached and an interim data analysis revealed encouraging, but not yet significant, results. Further analyses revealed that the full cohort of 60 children will be required to reach statistical significance. Therefore, enrollment is ongoing and interested individuals are invited to learn more about the study at: http://clinicalstudies.info.nih.gov/detail...005-M-0225.html In some cases, childhood-onset OCD and tic disorders appear to arise as sequelae of common childhood infections, including Group A beta-hemolytic streptococcal (GABHS) infections. Children whose symptoms begin or exacerbate following GABHS infections may belong to a subgroup of neuropsychiatric disorders identified by the acronym PANDAS (for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal infections). The PANDAS subgroup shares several common clinical characteristics and may share a common pathophysiology for their symptoms. The postulated etiology for the PANDAS subgroup is that specific strains of GABHS, in genetically susceptible individuals, elicit the production of cross-reactive antibodies which recognize antigens not only on the strep. cell wall, but also in the host brain tissue, eliciting obsessions, compulsions, tics and other neuropsychiatric symptoms. The cross-reactive antibodies have been shown to correlate with other anti-streptococcal antibodies and also with neuropsychiatric symptom severity, with highest titers seen in children acutely ill with Sydenham chorea or PANDAS symptomatology. A recent report by Yaddanapudi et al (Mol Psychiatry advance on-line publication, 11 Aug 2009; doi10.1038/mp.2009.77)demonstrated that passive transfer of these cross-reactive antibodies resulted in stereotypies and other neurologic symptoms in the recipient mice. This paper adds to the results of more than 15 years of research at the NIMH intramural program and elsewhere, demonstrating that: the PANDAS subgroup has a specific and identifiable symptom course (marked most notably by the acute, abrupt, overnight onset of symptoms ("zero to sixty in less than 24 hours"); the cross-reactive antibodies correlate with both GABHS infection status and neuropsychiatric symptom severity; prevention of GABHS infections through antibiotic prophylaxis results in prevention of neuropsychiatric symptom exacerbations; and, treatment of acutely ill children with immunomodulatory therapies (specifically, intravenous immunoglobulin (IVIG)or plasmapheresis) results in dramatic reductions in symptom severity. This line of research is unusual, in that it reversed the typical "bench to bedside" progression and took clinical observations and experiences into the laboratory in search of information about etiopathogenic mechanisms. The results proved exciting, as the cross-reactive antibodies identified antigenic targets in the CNS which provide new targets for therapeutic interventions. If novel therapies can be developed, it will have a tremendous public health impact, as 1 in 150 children suffers from OCD and many do not benefit from currently available treatments. During this reporting period, the Branch's research on PANDAS has focused on determining the temporal relationship between streptococcal infections and symptom onset and exacerbations. Children with recent-onset OCD were followed prospectively for up to two years, with clinical evaluations and serial serum samples. The temporal relationship between symptom exacerbations and streptococcal infections is being examined to determine whether or not membership in the PANDAS subgroup can be predicted at initial presentation. Final data analyses are being completed at the time of this writing, in collaboration with Dr. Tanya Murphy at Univ of South Florida. In addition, the samples from children with a PANDAS symptom course will be sent to Dr. Madeleine Cunningham (Univ Oklahoma) and Dr. Christie Kirvan (UC-Davis) for cross-reactive antibodies assays.