CLINICAL TRIALS & RESEARCH STUDIES
NEUROBIOLOGIC, IMMUNOLOGIC & RHEUMATOLOGIC MARKERS:
This study is currently recruiting participants. This study is an investigation of the neurologic, immunologic, and rheumatologic markers of Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS). The purpose of this study is to examine specific neurologic, immunologic, rheumatologic, and genomic, components in children with the acute-onset of psychiatric symptoms. This research may begin to uncover a much larger story of autoimmune processes that are involved in psychiatric disorders of childhood. By better understanding the etiologic components of psychiatric phenomenon, future treatments may be better targeted to underlying causes.
BLOOD BRAIN BARRIER STUDIES:
Two separate studies are being conducted on animals to examine the impact of strep on the blood brain barrier. Each study will use a different technique to examine the blood brain barrier cleaving in live animals as well as be able to “see” what pathogens, immune response cells, including antibodies, are traveling through the barrier. B cells, T cells and cytokines will also be measured in the brains of the mice exposed to strep. If successful, the studies should provide a mechanism whereby strep can open the blood brain barrier. Additionally, it may provide information on why the barrier does not return to the closed state. Lastly, by viewing the material transported through barrier, clues may be found as to the mechanism causing the OCD and movement symptoms.
CAM KINASE INTERRUPTION STUDY:
Taking 30 blood samples, a new peptide therapy would be applied to neuronal cells that could stop the mechanism which is suspected of causing many of the PANS and PANDAS symptoms. Preliminary results are promising. Top researchers in the country will be involved.
Funding required is $10,000. If you wish to donate to this study please visit our donation page.
A case/control, blinded research study involving one of the top strep microbiologists in the U.S., along with major university hospitals on the east coast has been designed and is awaiting funding. If your child or patient is diagnosed with PANDAS or PANS and is planning to have a tonsillectomy we would like to arrange for the tonsils to be transported to the research center conducting the study. The tonsils will be analyzed for the presence of different strep strains, other pathogens and signs of unique immune system activity. The tonsillectomy should be paid for by the patients insurance or parents.
Instructions for ENT’s to transport the tonsils will be provided and the cost of transport will be covered by the study. Funding is required. If you wish to donate to this study please visit our donation page.
UPDATE: This study is not currently accepting tonsil samples.
PET SCAN STUDY:
A study of the body’s immune response in the brain is to be studied using Positron Emission Tomography (PET) technology to assess neuroinflammation in the brain.. PANS patients will be scanned before and after treatment with IVIG. The study is based on strong preliminary data suggesting abnormal activity of immune cells (microglia) in the basal ganglia during exacerbations of PANDAS. If successful, the study could lead to a powerful biomarker of the disorder, and provide insight into the cause of the disorder. Patients admitted to the study will bear no expense for the PET scans,or the IVIG treatment or travel.
Funding is required. If you wish to donate to this study please visit our donations page.