New JCAP Research Papers on PANS

New research articles published provide ” a watershed moment in our thinking about PANS”, according to Harold S. Koplewicz, MD, Editor-in-Chief of the Journal of Child and Adolescent Psychopharmacology.

Mary Ann Liebert, Inc. publishers and the Journal of Child and Adolescent Psychopharmacology are pleased to provide complimentary 2-week access, beginning today, to these important PANDAS/PANS articles.

Research papers include:

We encourage you to  download and print a copy.Just click on FULL TEXT PDF to access it. Just click on FULL TEXT PDF to access it.

More research papers will follow and purchase of the entire Journal will be available soon from JCAP at a discounted rate for parents and physicians.

Neuroinflammation Varies Between PANDAS & TS: New Research Findings

 

Current Issue Cover

Earlier this year, The Journal of Nuclear Medicine  published “Basal ganglia inflammation in children with neuropsychiatric symptoms” by Drs. Kumar, Williams, Musik and Chugani.

The research showed a significant difference in brain inflammation patterns between PANDAS children and those with Tourette Syndrome (TS). This information was obtained through special PET scanning.

These findings are very important because it reinforces the stance that PANDAS is not just Tourettes or OCD, but it is different and requires different treatment protocols. It also signifies the difference in the etiology, or cause, of the two disorders.

In June 2014, Dr. Ajay Kumar, M.D., Ph.D. won a Young Investigators Award for his work in this study.

To read the abstract, visit http://jnumedmtg.snmjournals.org/cgi/content/meeting_abstract/55/1_MeetingAbstracts/306.

 

 

 

PANDAS Network has discussed Dr. Chugani’s work before. The following is what we reported in May 2011…

“Dr. Harry Chugani at Children’s Hospital of Michigan, is studying the potential use of PET scans as diagnostic tools for PANDAS Dr Chugani states that the basal ganglia are not hard to detect on an MRI scan. In fact, the basil ganglia are large structures. However, the MRI scan is not useful for detection of abnormal microscopic, neurological functioning in the basal ganglia because MRI scans look at anatomy, i.e., tissue density and damage, water displacement, inflammation of tissue (and not the neurological function of this part of the brain). PET scans, or Positron Emission Tomography scans, may be used instead of, or in addition to, magnetic resonance imaging (MRI) scans. This gives anatomic andfunctional information.

The PET scan works by using PK-11195, a radioactive material, to target the inflammatory cells of the brain.  This chemical is attracted to inflammatory cells and gives information on how the basil ganglia are functioning. Some of the PET scans on PANDAS. children are identifying inflammation in the basal ganglia. This may be useful as the long awaited confirmation of PANDAS that parents have sought.

Dr Chugani said, “By finding PET scan evidence of abnormality in the basal ganglia, we may now have a biomarker for PANDAS Indeed, following IVIG in some PANDAS subjects, the abnormality in basal ganglia has gone away on repeated PET scan. These studies are rather preliminary, on a limited number of subjects, and much more work needs to be done.”

*Please note that Dr. Chugani is not a “PANDAS doctor”.  However this research can really make an impact in the future of diagnosing PANDAS.”

Towson University Seeking Study Participants

Towson University is seeking participants for a research study investigating the educational experiences of children and families with PANDAS or PANS. The study is being conducted by Primary Investigator, Patricia Rice Doran, Ed.D.

The study includes interviews, preferably in-person, but via telephone is acceptable. Please see the information below if you are interested in particiating.

 

Families of children with PANDAS/ PANS: Are you interested in sharing your story?

You are invited to participate in a research study investigating the educational experiences of children and families with PANDAS or PANS. Parents or guardians of children with a PANDAS or PANS diagnosis, and their children with PANDAS or PANS, ages 6-18, are eligible to participate. Parents can participate even if their children do not participate in the interview. This study consists of a 60-90 minute interview in which parents will answer questions about their experiences with PANDAS or PANS and its impact on schooling or educational experiences. Additionally, should parents and children be willing, children can participate in a 30-minute interview in which they discuss their school experiences. Interviews will occur in person or, if distance makes face-to-face meeting impractical, via telephone.

Participation is completely voluntary and all information will be kept confidential. There is no compensation for participation, but it is hoped that this study will contribute to the educational community’s knowledge base regarding support for children with PANDAS/ PANS in school settings. For more information, please contact Patricia Rice Doran, PI, at 410-704-3891 or pricedoran@towson.edu.

PANDAS Network Sponsors Study Led by Dr. Michael Cooperstock

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PANDAS Network.org is proud to be sponsoring a pilot study led by Dr. Michael Cooperstock, MD, MPH.

The funds will be used to complete the Moleculera Labs testing of 23 serum samples obtained from PANDAS/PANS patients. Six antibodies will be tested: anti-dopamine receptors 1 and 2, anti-lysoganglioside, anti-tubulin, and the CaM KII release assay, and a new anti-serotonin receptor test.

The pilot study will use daily symptom tables to look for relationships between symptoms and intercurrent illnesses, and whether discrete symptom flare-ups are more common at first and then level off with time. The study will attempt to determine whether any of the six antibodies tend to group together, and whether any antibody or combination of antibodies relate to specific clinical symptoms;  to the overall severity of symptoms; or even apparent responses to various treatments.

“Our hope for this pilot study is that it will provide information to help inform the design of a multi-center prospective study, one that will be compelling enough to attract substantial national funding. Our collaborating group plans to meet (in the summer) to begin discussions about how best to proceed,” said Dr. Michael Cooperstock, MD, MPH.

Dr. Michael Cooperstock, MD, MPH is the Chief, Division of Infectious Diseases and Rheumatology Department of Child Health, Columbia, MO, Professor Emeritus, Univ. of Missouri School of Medicine.

 

 

Dr. Michael Cooperstock, MD, MPH to Present at Upcoming PANDAS/PANS Symposium!

We are happy to announce Dr. Cooperstock has been added to the list of speakers to present at the West Coast PANDAS/PANS Symposium on April 26, 2014 in California!

Dr. Cooperstock will be joined by Dr. Susan Swedo (Chief Pediatrics and Developmental Neuroscience Branch at the NIMH), Dr. Jennifer Frankovich (Pediatric Rheumatologist, Director PANS Clinic, Lucile Packard Children’s Hospital Stanford), Dr. Melanie Alarcio (Pediatric Neurologist, Leading PANDAS/PANS Physician), Amy Smith (Nurse Practitioner, Integrative Medicine,Director PANDAS/PANS Program, Hill Park Medical Center , Dr. Eric Fier (Child, Adolescent and Adult Psychiatry, Leading PANDAS/PANS Physician), Dr. Jamie Candelaria-Greene (Education Specialist, Visiting Scholar, UC Berkeley), and Dr. Margo Thienemann (Child & Adolescent Psychiatrist).

Registration is now open. For more information, please visit http://pandasparentsymposium.blogspot.com/.

 

 

“Brain, Behavior, and Immunity”: Strep and Behavior

The recent publication of the journal “Brain, Behavior, and Immunity” includes  Behavioral and neural effects of intra-striatal infusion of anti-streptococcal antibodies in rats.

“The present study tested the causal role of the antibodies by assessing the behavior of naïve rats following passive transfer of purified antibodies from GAS-exposed rats. Immunoglobulin G (IgG) purified from the sera of GAS-exposed rats was infused directly into the striatum of naïve rats over a 21-day period. Their behavior in the induced-grooming, marble burying, food manipulation and beam walking assays was compared to that of naïve rats infused with IgG purified from adjuvant-exposed rats as well as of naïve rats. The pattern of in vivo antibody deposition in rat brain was evaluated using immunofluorescence and colocalization. Infusion of IgG from GAS-exposed rats to naïve rats led to behavioral and motor alterations partially mimicking those seen in GAS-exposed rats.”

“Our results demonstrate the potential pathogenic role of autoantibodies produced following exposure to GAS in the induction of behavioral and motor alterations, and support a causal role for autoantibodies in GAS-related neuropsychiatric disorders.”

Only the abstract is available for free and can be found at http://www.sciencedirect.com/science/article/pii/S0889159114000555

 

This publication references the 2012 Tel Aviv study Behavioral, pharmacological, and immunological abnormalities after streptococcal exposure: a novel rat model of Sydenham chorea and related neuropsychiatric disorders. That study “show(ed) that exposure of rats to GAS antigen leads to the production of anti-neuronal antibodies concomitant with the development of behavioral alterations.”

To read a 2010 article referencing the Tel Aviv study, visit Obsessing Over Strep Throat in Kids: TAU research links obsessive-compulsive disorder to common childhood illness.

 

Related links:

Research and Articles

Have you completed the RETROSPECTIVE ONLINE SURVEY?

flyer survey websiteHave you completed the RETROSPECTIVE ONLINE SURVEY?

http://pandasnetwork.org/survey/

The study will likely reach its needed 500 respondents in a few weeks, but will remain open until the end of year.

If you have done the survey yet, we suggest doing it NOW before it closes. If you started the survey but did not finish, please go back, complete it, and click SUBMIT. Your info will NOT be counted if you do not hit SUBMIT.

This survey needs to be done by everyone – those in remission, new onset, & those still actively experiencing PANDAS and PANS.

This is your chance to help show our similarities/differences. This is your chance to be part of the discovering unanswered questions!

 

*This survey is completed online at your convenience. This does not include a phone follow up, it does not include an in-person or in office interview,  and is completed by the parent or caregiver. It is entirely done online.

 

Related Posts:
Online Research Study Now Active: “Retrospective” Survey

Cunningham Paper Links Autoimmunity with Neuropsychiatric Symptoms

PANDAS Network Sun

 

In the newly published paper Dopamine Receptor Autoantibodies Correlate with Symptoms in Sydenham’s Chorea , Drs. Ben-Pazi, Stoner, and Cunningham linked, for the first time, autoimmunity with neuropsychiatric symptoms.

This paper is based on findings in children with SC (Sydenham’s Chorea), but lays the foundation for PANDAS and PANS as well.

Over the past years, clinical research groups have been searching for the targets of autoantibodies in neuropsychiatric illnesses including SC , and related neurologic sequelae of group A streptococcal infections. Since SC is a well established neurologic manifestation of rheumatic fever, it may serve as a prototype for other streptococcal related neuropsychiatric disorders. It is possible that our data may advance the understanding of SC and other childhood neuropsychiatric disorders based on their relationship to anti-D1R and anti-D2R antibodies.

To read the paper in its entirety for free, visit http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3779221/.

 

Related Posts:
Moleculera Labs Opens!
INTERNATIONAL Cunningham Panel of Tests Available through Wieslab
Diagnostic Tests: The Cunningham Panel
“PANDAS and Autoimmunity”-Summary of Dr. Cunningham’s AutismOne Presentation

Donate to Dr. Agalliu’s Lab: UC Irvine PANDAS Research

Dr AgalliuPANDAS Network.org is excited to give donors an easy way to contribute to Dr. Dritan Agalliu’s PANDAS research!

Dr. Dritan Agalliu studies the molecular, cellular and genetic analysis of mammalian blood-brain barrier development and the role of the barrier in disease pathogenesis. Dr. Agalliu research plans to explain the mechanisms that break down the blood-brain barrier in PANDAS. This knowledge will enable the development of therapies to prevent immune cell or antibody entry into the nervous system, thereby providing long-term treatment for PANDAS.

The laboratory is investigating two fundamental issues in the biology of the mammalian blood-brain barrier (BBB): 1) the mechanisms governing development and maintenance of the barrier; and 2) how structural components of the BBB are affected in diseases of the brain and spinal cord where barrier function is impaired.

 

Donate to Dr. Agalliu’s research at https://ua-web.uadv.uci.edu/eGiving/.
Area of Support: Biological Sciences – Gift Designation : “PANDAS Research”.

You can reference his research and the donate link via the donate section of the PANDAS Network.org website. Please refer to pandasnetwork.org/donate/agalliu

PANDAS Network.org Joins the AARDA’s NCAPG

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PANDAS Network.org is honored to be accepted into the AARDA’s NCAPG. The NCAPG is the National Coalition of Autoimmune Patient Groups and it is supported and facilitated by the American Autoimmune Related Diseases Organization. The mission of the group is To consolidate the voice of autoimmune disease patients and to promote increased education, awareness, and research into all aspects of autoimmune diseases through a collaborative approach”.

To learn more about AARDA and the NCAPG, please visit www.aarda.org

Online Research Study Now Active: “Retrospective” Survey

This survey is closed. Thank you for participating!

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PANDAS-PANS-PITAND Retrospective Research Study Invitation
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You are invited to participate in an online survey research study from the University at Buffalo in collaboration with Dr. Tanya Murphy from the University of South Florida to learn more about the symptoms, diagnosis, interventions, and clinical course of children with PANS including PANDAS and PITAND.

Participants in this study can elect to remain anonymous or they can elect to have their name and /or their child’s information entered into a registry for future research.