Summary of JBRF Research

Over the past several years,

  • JBRF has acquired the world’s largest data set of symptoms experienced by children at risk for, or diagnosed with bipolar disorder.
  • From this, investigators have defined a syndrome called Fear of Harm (FOH) which is based on a heritable trait and describes a severe, often treatment-resistant illness.
  • A majority of the children (and adults) at risk for or diagnosed with bipolar disorder are described by FOH.
  • Investigators have been able to describe a neuroanatomical model of the illness and have determined that problems with body temperature regulation underlie the condition.
  • Studies are underway to explore the observed effectiveness of ketamine to reduce the symptoms of FOH.

In an effort to promote a better understanding of the illness experienced by many children who are at risk for, or diagnosed with bipolar disorder, the JBRF funds research by independent investigators who have come together to form a scientific consortium.

The data used by the consortium comes from the clinical data generated through the JBRF website. Since 2001, JBRF has collected symptom data from over 19,000 affected children. This is a unique resource and the largest source of such information in the world. These large data sets have provided the opportunity for investigators to explore the full and natural expression of illness in these children.

While the journey started off with the goal to better refine an understanding of how bipolar disorder is uniquely experienced by children, the open-minded inquiry ultimately revealed a more profound result.

The research has delineated a new and important profile of behaviors and symptoms which, unlike current classifications of disorders, seems to be an example of a true brain disorder. The syndrome, which is expressed along a spectrum of severity, has been named Fear of Harm (FOH).

Investigators found that the majority of children who are currently diagnosed with bipolar disorder exhibit this condition. It can start at a very young age and follows them into adulthood. This means that FOH is not unique to children nor is it a developmental version of another illness. The adults affected by the condition would be those who are strongly affected by mood disorder but who, like many of the children, would probably (but not necessarily) not qualify for a DSM diagnosis of bipolar disorder. People affected by FOH are often severely impaired by the illness and treatment resistant.

The reason why we make the bold statement that this seems to be a true brain disorder is because the investigators have amassed a significant amount of information regarding the likely neurological and physiological conditions which cause it. Rather than finding disconnected but interesting facts, the research continues to move forward with increasing coherence and depth; both physiologically and neurologically.

Surprisingly, thermoregulation, the system by which the body maintains its proper temperature, has been found to be critical to the expression of this illness. While thermoregulation is not associated with any current psychiatric classification, its profound and complex effect on the body and the brain cannot be dismissed.  Evidence so far demonstrates that children with this condition have a problem with how their bodies dissipate heat. (see FOH and Body Temperature)

The heritable trait of the condition as well as the thermoregulatory hypothesis prompted investigators to select a treatment regimen which appears to be quite effective in treating the syndrome. The reliability with which it reduces the primary symptoms of the syndrome, all of which return when the drug wears off, supports the notion that the syndrome is properly defined.

Studies are ongoing which will hopefully document the safety and efficacy of the treatment as well as provide more data that will validate the syndrome and identify a testable biomarker for the condition.

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