Intervention in ESSENCE

Overview of research programme

Our research programme is focused on clinical trials to investigate the phenotype and treatment of various ESSENCE conditions, i.e. neurodevelopmental disorders. Our team has for many years been engaged in international medication trials for ADHD and have also initiated several studies to examine novel treatments for ADHD and other ESSENCE, including behavioral treatments for problem behaviors associated with ESSENCE impairments.  

Past projects

We have been engaged both as trial administers and national coordinators in several international multi-centre randomised placebo-controlled trials (RCTs) of newly developed medications for ADHD in children and adolescents, trials which have served as a basis for the approval of these medications in Europe. We performed an RCT of Omega 3/6 treatment for children and adolescents with ADHD (2009), and an RCT of Omega 3/6 for reading ability in mainstream schoolchildren (2016). We did a small open pilot trial (2012) of a cognitive training method “Collaborative Problem Solving, CPS” for children and adolescents with ADHD and severe irritability/problem behaviours, and have recently completed a large RCT (under review for publication 2021) with a modified form of the method (Problem Resolution for ESSENCE; PR-ESSENCE) for children with autism and/or ADHD with similar severe problems.  We have recently completed an observational cohort study investigating the phenotype of children and adolescents with a suspected neuroinflammatory condition called “Paediatric Acute-onset Neuropsychiatric Syndrome, PANS”.

Ongoing projects

A large (n=130) open trial of long-term (2 years) medication for ADHD will soon be completed, looking at effectiveness in improving ADHD symptoms, functioning in school, family, with friends and in everyday activities, and quality of life.

OPHELIA (ON PANS: HOLISTIC EPIDEMIOLOGY, LONGITUDINAL IMMUNOTHERAPIES, ADDITIONAL TREATMENTS) PANS RESEARCH CLINIC is a scientific research project at Gillbergcentrum, Sahlgrenska Academy, funded by the Ophelia Foundation, The Swedish Child Neuropsychiatry Science Foundation, and Hjärnfonden (The Brain Foundation).

The project started in the autumn of 2020, and aims to increase knowledge about the symptoms, causes and treatment of acute neuropsychiatric disorders (PANS / PANDAS) that can occur mainly in children and adolescents. PANDAS (Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections) was described in the 1990s by researchers at the National Institute of Mental Health in the United States. A link had been observed between streptococcal infections and acute onset of obsessive-compulsive disorder and / or tics along with other neuropsychiatric symptoms. Later it was found that other infections (e.g., other bacteria and viruses) could also give similar symptoms and a group of researchers defined the diagnosis PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) in 2010. PANS is characterized by the child suddenly developing severe symptoms such as obsessive-compulsive disorder, eating disorder, separation anxiety, difficulty concentrating, tics and other involuntary movements, impaired motor skills, irritability / outbursts, urinary incontinence / enuresis, regression in development, hallucinations, and muscle and joint pain. The symptoms are thought to be caused by a neuroinflammatory reaction following an infection. Treatments that have been tried are antibiotics, anti-inflammatory treatment, immunomodulatory and psychiatric (psychopharmacological and psychological) treatment. The scientific basis is still insufficient and there is a great need for research on causes, diagnostics and treatment. PANS / PANDAS are diagnoses of exclusion, i.e., all other known medical, neurological and child psychiatric conditions must have been investigated / assessed / excluded.

Study participants are accepted for assessment at the Gillberg Neuropsychiatry Centre upon referral. Child psychiatric and pediatric / neurological assessment / investigation of other possible diseases / conditions should have been made and described in the referral. After consultation within our research team, one or more visits are offered for assessment with us. The project includes a treatment study with intravenous immunoglobulin (IVIG). In the study, some 10 children / adolescents will be given treatment with IVIG once a month for 6 months. If you wish to participate in the treatment study and you meet inclusion criteria for participation, evaluations are made by a doctor, psychologist, physiotherapist and research nurse on an ongoing basis during the study, with e.g., assessment forms, psychologist tests, motor tests, blood tests and possibly magnetic camera examination. The study has been planned in collaboration with the Pediatric Examination Unit (PCRC), Sahlgrenska University Hospital, and is carried out in collaboration with the Emergency Physicians in Gothenburg and VO Image and function, Skåne University Hospital, Lund.

Future projects

An RCT (n=70) to test the PR-ESSENCE treatment model for children and adolescents placed in The Swedish National Board of Institutional Care’s (Statens institutionsstyrelse, SiS) youth treatment homes due to severe problem behaviours, risk-taking and conduct disorders is planned to start during the autumn 2020. A long-term follow-up study of the symptom and functional trajectory for our PANS cohort is ongoing, and an open-label trial of IVIG treatment for PANS is planned to start this autumn.