Newsletter EU-GEI - July 2015
   
   

Introduction
   
   

Research news: genetics
   
   

Research: pathway to care
   
   

Recruitment numbers of EU-GEI
   
   

A user-led study on stigma resilience
   
   

Momentary Assessment Tool: the PsyMate app
   
   

Public EU-GEI training site
   
   

The EU-GEI project summarized ....
   
   

EU-GEI partners and affiliated partners
   
   

EU-GEI contact
   


 



 
Introduction

Dear readers,

After 5 intense project years, the EU-GEI project has now reached the phase in which the data has been collected, and the analyses are being conducted. While the official project period of 5 years has now been reached, the consortium and affiliated members have all committed themselves to the continuation of our successful collaboration. Therefore, EU-GEI has converged the research efforts on gene-environment interactions in psychotic disorders into a multicentre, cross-disciplinary study which is unprecedented in size, international participation, data quality and analytical power.

As you will read in this news letter, much progress has already been made, but we are confident that the project will continue to harvest for the next years, or even decades.

We are particularly grateful to all study participants, administrative and supporting staff at the various EU-GEI centres and within the EU itself, and look forward to continue the work together with you in our attempts to identify determinants and mechanisms underlying the onset and course of psychotic disorders.

Jim & Bart



 

 



 
Research news: genetics

"... Risk genes are a window to what is going wrong in schizophrenia. They provide clues to what might be going wrong in the brain..."

Neurogeneticist Professor Michael O'Donovan has led EU-GEI's work package dealing with the genetics of schizophrenia. At Cardiff University Professor O'Donovan leads the biggest genetic study of schizophrenia ever conducted. The studies have resulted in the discovery of over 100 genetic mutations linked to schizophrenia. What do these findings mean and will they hold clues to a cure?

Mental health campaigner Jonny Benjamin, who lives with schizoaffective disorder visited Professor O'Donovan at Cardiff University and challenged him on developments in the treatment of schizophrenia.

"...Many researchers, including me, are beginning to view what we call schizophrenia as an end-of-the-line condition that is actually the manifestation of a disease process that has taken place earlier. It's a bit like when someone has a heart attack, it is actually very difficult to repair the damage it has wrought, but if you spot the symptoms of its development before it happens, it is quite possible to prevent it ..."

To see the full interview please use the following link:
http://www.cardiff.ac.uk/research/news/challenge-cardiff

Challenge Cardiff gives users and beneficiaries of the research at Cardiff University a chance to push researchers towards their next challenge. It tackles many of the most pressing issues for Wales, the UK and the wider world.

Contact: challengecardiff@cardiff.ac.uk

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Research: pathway to care


Pathway to care and access to mental health services of patients with first episode psychosis in Europe

The bulk of the main EU-GEI data will be analyzed in the coming year which we expect will yield some major findings. Researchers have planned several studies that may affect or improve mental health service. One of these planned analyses involves pathways to care. The study will be performed by the two EU-GEI partners in London (UK) and Bologna (Italy).

Psychotic disorders including schizophrenia often begin with a prodromal phase of mild symptoms and impaired functioning before the onset of the frank psychosis. This phase could be potentially important from a preventive perspective: early detection of psychosis and access to adequate treatment alter the course of illness. The literature highlights, indeed, that a longer duration of untreated psychosis (DUP), the period between the onset of the disorder and the beginning of the treatment, correlates with an increased resistance to treatment, a higher frequency of relapses (Larsen, 2001; Lester, 2009), the lost of psychosocial skills and worse quality of life (Melle, 2004). The decline of cognitive functions and social skills takes place mostly in the early stages of disease, while there is the most susceptibility to the influence of environmental therapeutic factors (Lester, 2009; Malla, 2005).

In the last decade it has renewed the interest in the early stages of the disease with great attention, at an international level, to the early recognition of psychotic onset and its specific treatment (Krstev, 2004), which now is an important aim for public health. However, there is limited data on pathways to care of patients suffering from psychotic disorders and in particular on general/family practice.

General Practitioners (GP) may have a key role in the identification and management of first-episode psychosis, as they are often the first point of patient contact (Anderson, 2010). Therefore, increasing the uptake of primary care services may reduce the likelihood of negative pathways to care (Anderson, 2013). It would be important to understand which factors are associated with GP recognition of psychosis. This could orientate GPs’ training with the aim of reducing the DUP.

 

The aims of this study are to describe pathways to care of patients at the first episode of psychosis (FEP) before access to mental health services in different European countries; and to evaluate clinical and socio-economic factors affecting the GP’s detection.

 

Researchers hypothesize that patients with prevalent negative symptoms have longer DUP and are less identified and less referred to mental health services by GPs. Furthermore they presume that worse socio-economic status (to be single, to live alone, to be unemployed and low educated) and different cultural background (to be first generation migrants, ethnic minorities, etc) predict a higher degree of non-medical referral to psychiatric services

 

The study could allow to better identify characteristics of FEP people at higher risk of difficult pathway to care.  In addition, the study could explore the reasons for GPs' under-recognition of the onset of psychosis in several sites with different health-care systems and primary care services.

The study’s findings could inform new training for GP and social workers aimed to improve their skills of identification of “negative-psychosis” and may improve mental health service organizations.

 

For more information:
University of Bologna: Ilaria Tarricone (photo), Marco Menchetti, Domenico Berardi
Institute of Psychiatry: Craig Morgan (photo)

 



 

 



 
Recruitment numbers of EU-GEI


The core research in EU-GEI has been with human patients groups, their families and healthy adults. In order to study the impact of genetic, environmental and clinical predictors for the onset, severity and course of schizophrenia the project had set high goals at the start of the project.
Our ambition to recruit 10.000 subjects has nearly been reached due to the very hard work of the researchers at the different EU-GEI and affiliated sites. We have succeeded in recruiting 9.878 subjects! A number we would not have been able to reach without the perseverance of our researchers ánd the enthusiasm and commitment of our subjects!

Thank you for your contribution to the EU-GEI project!

On the left you can find the total and final numbers of subjects per site and country in the Work Packages 2, 5 and 6. The overview can also be found at the EU-GEI website, at: www.eu-gei.eu/about-the-project/recruitment






 

    A user-led study on stigma resilience
Experiences and recommendations for future user research


EU-GEI Work Package 7 included a user-led project on stigmatization in psychosis (D-STIGMI) conducted at the Department of Psychiatry and Neuropsychology of Maastricht University.

Stigmatization is an important phenomenon with negative consequences that many people with (a diagnosis of) schizophrenia or other psychotic disorder will have to deal with. In the project, possible effects of stigmatization and its consequences on the course and outcome of schizophrenia have been investigated. Different types of stigma - public stigma, self-stigma and label avoidance - may each have detrimental effects on this disorder. Stigmatization is considered here as an environmental risk factor that exerts its influence along diverse pathways. People can become (more) stigma resilient. We used interviews, questionnaires and the Experience Sampling Method to investigate stigma.

Since stigma - stereotypes, prejudice and discrimination - is hard to tackle, it is important to focus on what one can do his or herself to cope with stigma and diminish the negative consequences it can have on the individual, and on his or her family and the society as a whole as well. The data that have been collected in the D-STIGMI study will focus on stigma experiences as well as on coping strategies, so that these may be addressed in both treatment and psycho-education.

In EU-GEI’s D-STIGMI study, service users were involved in diverse elements of the research process, such as the design of the study, recruitment of participants, data analyses and dissemination.  This process and the different roles service users had during the diverse stages of the research process have been described in a tool. This tool is now available via the EU-GEI website,
at: http://www.eu-gei.eu/about-the-project/tools






 

 

 
Momentary Assessment Tool: the PsyMate app


In order to better understand fluctuations in behaviour and experiences in the flow of daily life, EU-GEI scientists have developed the PsyMate device and application. This data collection and software tool is able to capture multiple parameters in the flow of people's everyday life. The PsyMate tool helps to empower patients in managing their own life, it helps clinicians in terms of diagnosis, and it can contribute to the evaluation of mental health care interventions. The tool received the (Dutch) Mental Health TECH award in 2015.

 

The PsyMate App is a platform to run ecological data-collection schemes and embedded mobile interventions that can be customized to different needs in research and basic clinical practice.

The PsyMate App implements the “PEAS 4.5 specs” that define the intended functionality of the PsyMate and the context in which it should operate. The PsyMate is protocol-driven. Protocols specify the different moments for data collection (e.g. based on time or beeper based algorithms or on events) and the type of data ((self-report) questionnaires or sensor data). Algorithms can be added that trigger additional data collection (or provide the user with instructions). These triggers can be defined on user-based reports (e.g. high anxiety) or contextual information (e.a. changes in places tracked by GPS or activation tracked by the motion sensors).

 

The data capture is very user-friendly: at irregular intervals during the day (i.e. randomized), the PsyMate App will beep to prompt the user to fill in basic information on mood states and current circumstances and experience (this is called the “Experience Sampling Method” or ESM).  Filling in the prompted questionnaire takes around 2 minutes.  Data are then stored and can be analysed after e.g. 1 week to build up what is called a “film” rather than a “snapshot” of daily life.

 

A so-called ‘demo’ App is available for free and accessible without restrictions for users and clinicians. It is actually available in 5 languages (English, French, German, Dutch, Spanish) and other translations are in preparation. Because everyone can subscribe to it, it is also used in fields outside mental health, such as somatic care (primarily stress related illnesses as IBS, post stroke rehabilitation, etc), and organisational psychology.

 

For more information, please go to: www.eu-gei.eu



 

    Public EU-GEI training site

An essential part of the activities of EU-GEI's work package "Training" has been the development of an enclosed web based training area of the EU-GEI website: GET-THERE (Gene Environment Tools-Training Home Education Reliability Europe). The website was intended to provide all EU-GEI researchers with information and training for the instruments to be used in the EU-GEI project for the diagnostic assessment, assessment of clinical characteristics and environmental risk factors. Apart from training documentation, manuals and instruments, it also presented audiovisual material on the most advanced instruments assessed in the project's work packages.

A part of the EU-GEI training site has now been made available to researchers outside the EU-GEI project. All training videos without confidential patient information are available for researchers nog involved in the EU-GEI project. Hereby an overview of the available materials:

CAARMS / Comprehensive Assessment of at Risk Mental States
available: instruction video, training video, reliability measurement, NEURAPRO vignette

Combined Social Scales
Socio demographics schedules, List of threatening Experiences, Childhood experiences of Care and Abuse, Bullying Questionnaire, Discrimination - Brief impact of events - Social of Care and Abuse, Bullying Questionnaire, Discrimination , Social Assessment tool
available: inter rater reliability video

GAF / Global Assessment of Functioning
available: training video

OPCRIT / Operational Criteria Checklist for Psychotic and Affective Illness
available: training video

PAS / Premorbid Adjustment Scale
available: training video

Cannabis Experience Questionnaire
available: training video

PsyMate: video of lecture

Shortened WAIS: Wechsler Adult Intelligence Test
available:  instruction video

SIS-R / Structured Interview for Schizotypy (revised)
available: instruction video

Migration history
available: presentation, questionnaires and background information

To make use of the training material, researchers need to obtain a password and user name log in. The login data can be requested via the project's website,
at http://www.eu-gei.eu/training-videos.



 

 

 
The EU-GEI project summarized ....


Up to 3% of people develop a psychotic disorder in the course of their lives, 1% will be one type of a schizophrenic disorder. European researchers, together with international partners, have been looking into genetic, clinical and environmental factors and mechanisms that determine the development, severity and outcome of schizophrenia. 

 

People with psychotic disorders are overwhelmed by inner experiences that disturb their ability to connect in an adequate way with their social environment. Importantly, there is currently no reliable method allowing to predict the risk of an individual to develop a psychotic disorder.

 

The risk to develop a schizophrenic disorder is known to be related to both a person's genetic make-up, and environmental factors during his/her course of life, such as adversity during childhood,  belonging to a society's minority group, drug use, or just living in a city rather than in a rural environment. Twin studies show that susceptibility to developing a psychotic disorder may be determined by genetics. It is assumed, but still needs to be rigorously tested, that a person's genetic make-up also influences the role that environmental factors can play to enhance/or decrease risk for psychiatric disorders.

 

To address the key question whether gene-environment interactions determine the risk to develop schizophrenia, a multidisciplinary, multinational collaboration within, and beyond, Europe has been initiated 5 years ago: the EU-funded 'European network of national schizophrenia networks studying gene-environment interactions' (EU-GEI). 

 

EU-GEI has investigated genetic, environmental, behavioural and clinical variables in samples and data from more than 9 000 individuals, including families of patients with psychotic disorders, twin pairs and health comparator individuals from the general population.

 

In order to better understand fluctuations in behaviour and experiences in the flow of daily life, EU-GEI scientists have developed the PsyMate device and application. More information on the PsyMate can be found in this newsletter.

 

Recruitment and data collection has been ongoing for almost four years in most centres, and a fully functional database has been established that handles the large quantities of incoming data from the large EU-GEI cohorts that will provide the largest set of data available on genetic, environmental, behavioural and clinical variables in psychosis in particular schizophrenia. DNA samples collected under EU-GEI are all genotyped in the project's centralised genotyping facilities, and a large number of subjects have already been genetically analysed. Approaches for statistical analyses of the complex EU-GEI data sets have been developed and are currently in use.

The full data set from the Dutch part of the study has become available and is currently under investigation for genotype x environment interactions. First explorations have already provided replicated evidence that the impact of cannabis use on psychosis is moderated in people that carry a specific variant of the AKT1 gene.

 

Considerable progress has been made in discovering genetic variants that increase risk for schizophrenia. Moreover, functional neuroimaging studies have discovered correlates of environmental exposures in the brain.

 

The prime clinical relevance of the EU-GEI project will be the establishment of risk assessment charts based on genetic, environmental, behavioural and clinical variables. These momentary assessment tools, which are amendable to predict risk to develop clinical manifestation of psychotic disorders, will significantly improve diagnosis, treatment outcome prediction and treatment evaluation. 



 

 

 
EU-GEI partners and affiliated partners

PROJECT COORDINATOR
Universiteit Maastricht

EU-GEI PARTNERS
Institute of Psychiatry / King's College London
Cardiff University
Central Institute of Mental Health
Ankara University
Servicio Madrileno de Salud
Academisch Medisch Centrum - Universiteit van Amsterdam
Institut National de la Santé et de la Recherche Medicale (INSERM)
Katholieke Universiteit Leuven
University Mental Health Research Institute
Medizinische Universität Wien
Universität Basel
Universität Köln - Universitätsklinikum
SERMES Planificacion
Wingz b.v.
E.C.S. International BV
Omega Pro Proje Arastirma Gelistirme ve Danismalik Ltd Pti
Mediamens B.V.
The University of Hong Kong
Universidad del Pais Vasco
The Chancellor, Masters and Scholars of the University of Cambridge
Royal College of Surgeons in Ireland
Ludwig-Maximilians-Universität München
Alma Mater Studiorium - Universita di Bologna
Universita Degli Studi di Palermo
University of Melbourne

For contact details see HERE

Affiliated partners
EU-GEI's affiliated partners are external parties participating in the project. As conditions of participation, affiliated partners have agreed to meet the EU-GEI standards with respect to the identification, recruitment and assessment of subjects. All related costs will be met by the new affiliated centers (with no funding being available form EU-GEI).

Universidade de Sao Paulo (Brazil)
University of Verona (Italy)
University of Copenhagen (Denmark)
UPC Kortenberg / Katholieke Universiteit Leuven (Belgium)
Centre Hospitalier Saine Anne - Paris (France)
Universitat Autònoma de Barcelona (Spain)
Federal University of Sao Paulo (Brazil)
University of Belgrad (Serbia)



 

    EU-GEI contact


Project Management:
Karin Quanten
Maastricht University Medical Centre
Department of Psychiatry and Neuropsychology
Location Vijverdal
Vijverdalseweg 1, 6226 NB, Maastricht - The Netherlands
PO Box 616, 6200 MD, Maastricht - The Netherlands
T +31 43 3883600 / F +31 43 3884122
Karin.Quanten@maastrichtuniversity.nl

Wendy Beuken
Maastricht University Medical Centre
Department of Psychiatry and Neuropsychology
Location Vijverdal
Vijverdalseweg 1, 6226 NB, Maastricht - The Netherlands
PO Box 616, 6200 MD, Maastricht - The Netherlands
T +31 43 3883702 / F +31 43 3884122
W.Beuken@maastrichtuniversity.nl

This newsletter was produced as part of EU-GEI dissemination activities.
Contact: Karin Quanten

Design by MediaMens

EU-GEI: European Network of National Schizophrenia Networks studying Gene-Environment interactions
www.eu-gei.eu



 

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