There are many early psychosis cohorts in the world. Epidemiological research with these cohorts over the past decades has greatly increased the understanding of distribution and mechanisms of psychotic disorders. Carrying out cross-country comparisons on a larger scale is extremely costly. An alternative strategy is to pool the existing large amount of data from high-quality early psychosis studies at an individual patient level. This approach has multiple advantages: it allows for examining psychosis determinants with greater precision, also including rare exposures and outcomes, focusing on (long-term) follow-up, and making optimal use of already existing data. To achieve this, the International Psychosis Epidemiology Consortium (IPEC) has catalogued and harmonized data from early psychosis cohorts and set up a virtual databank. With this databank, multiple (epidemiological) studies within the scope of the following research question will be conducted: “What drives the course of functional, existential and clinical outcomes of (early) psychosis and how does the social and geographical context shape these patterns?”.
WebsiteNetwork detailsCataloguePSYCONN
Psychosis Cohort Northern Netherlands
Description
PSYCONN (=Psychosis Cohort Northern Netherlands) is a combination of 3 datasets from the northern part of the Netherlands; PROGR-S (=Psychosis Recent Onset GRoningen Survey), PHAMOUS (=Pharmacotherapy Outcome and Monitoring Survey) and RQ-MIS (=RoQua Management Information System). Also, see https://umcgresearchdatacatalogue.nl/UMCG/ssr-catalogue/cohorts/MindLines. PROGR-S, initiated in 1997 without an age restriction, collects diagnostic measurements of patients with a suspected recent-onset psychotic episode or recurrent psychotic episode not diagnosed as such before. PHAMOUS, initiated in 2006, contains follow-up data of patients ≥18 years of age with a psychotic disorder who receive care from mental health care institutions in the northern part of the Netherlands (University Medical Center Groningen (UMCG)/University Center for Psychiatry (UCP), Lentis, GGZ Drenthe or GGZ Friesland). PROGR-S and PHAMOUS are both ongoing naturalistic prospective cohort studies. PHAMOUS participants will only be included when they are also enrolled in PROGR-S. RQ-MIS contains health care consumption, socio-demographic, and diagnosis data. PSYCONN baseline data is collected from PROGR-S and RQ-MIS. PSYCONN outcome data is collected from PHAMOUS, RQ-MIS, and an additional medical records file search.
General Design
- Type
- Cohort study, Registry
- Cohort type
- Clinical cohort
- Design
- Longitudinal
- Start/End data collection
- 1998 until 2018
Population
- Countries
- Netherlands (the)
- Regions
- Drenthe, Friesland, Groningen
- Number of participants
- 1000
- Population age groups
- Adult (18+ years)
- Main medical condition
- V Mental and behavioural disorders
- F20-F29 Schizophrenia, schizotypal and delusional disorders
- F20 Schizophrenia
- F20.0 Paranoid schizophrenia
- F20.1 Hebephrenic schizophrenia
- F20.2 Catatonic schizophrenia
- F20.3 Undifferentiated schizophrenia
- F20.4 Schizophrenia - Post-schizophrenic depression
- F20.5 Residual schizophrenia
- F20.6 Simple schizophrenia
- F20.8 Other schizophrenia
- F20.9 Schizophrenia, unspecified
- F21 Schizotypal disorder
- F22 Persistent delusional disorders
- F22.0 Delusional disorder
- F22.8 Other persistent delusional disorders
- F22.9 Persistent delusional disorder, unspecified
- F23 Acute and transient psychotic disorders
- F23.0 Acute polymorphic psychotic disorder without symptoms of schizophrenia
- F23.1 Acute polymorphic psychotic disorder with symptoms of schizophrenia
- F23.2 Acute schizophrenia-like psychotic disorder
- F23.3 Other acute predominantly delusional psychotic disorders
- F23.8 Other acute and transient psychotic disorders
- F23.9 Acute and transient psychotic disorder, unspecified
- F24 Induced delusional disorder
- F25 Schizoaffective disorders
- F25.0 Schizoaffective disorder, manic type
- F25.1 Schizoaffective disorder, depressive type
- F25.2 Schizoaffective disorder, mixed type
- F25.8 Other schizoaffective disorders
- F25.9 Schizoaffective disorder, unspecified
- F28 Other nonorganic psychotic disorders
- F29 Unspecified nonorganic psychosis
- F30-F39 Mood [affective] disorders
- F30.2 Manic episode - Mania with psychotic symptoms
- F31.2 Bipolar affective disorder, current episode manic with psychotic symptoms
- F31.5 Bipolar affective disorder, current episode severe depression with psychotic symptoms
- F32.3 Severe depressive episode with psychotic symptoms
- F33.3 Recurrent depressive disorder, current episode severe with psychotic symptoms
Organisations
Lead organisations
- GGZ FrieslandNetherlands (the)https://www.ggzfriesland.nl/
- LentisNetherlands (the)https://www.lentis.nl/
- University Medical Center Groningen (UMCG)Netherlands (the)https://www.umcg.nl
- GGZ DrentheNetherlands (the)https://www.ggzdrenthe.nl/
Available Data & Samples
Data categories
- Biological samples
- Survey data
- Medical records
- Physiological/Biochemical measurements
- Other
Areas of information
- Administrative information
- Date and time-related information
- Other administrative information
- Socio-demographic and economic characteristics
- Age/birthdate
- Sex/gender
- Twin
- Marital/partner status
- Family and household structure
- Education
- Ethnicity, race and religion
- Labour force and retirement
- Job history
- Parental occupation
- Income, possessions, and benefits
- Other socio-demographic and economic characteristics
- Lifestyle and behaviours
- Tobacco
- Alcohol
- Drugs
- Nutrition
- Physical activity
- Personal hygiene
- Sleep
- Other and unspecified lifestyle information
- Perception of health, quality of life, development and functional limitations
- Perception of health
- Quality of life
- Functional limitations
- Other perception of health, quality of life and functional limitation-related information
- Symptoms and signs
- Symptoms and signs involving the circulatory and respiratory systems (R00-R09)
- Symptoms and signs involving the digestive system and abdomen (R10-R19)
- Symptoms and signs involving nervous and musculoskeletal systems (R25-R29)
- Symptoms and signs involving cognition, perception, emotional state and behaviour (R40-R46)
- General symptoms and signs (R50-R69)
- Symptoms related to multiple categories
- Medication and supplements
- Medication and supplement intake
- Other and unspecified pharmacological interventions
- Non-pharmacological interventions
- Physical therapy interventions
- Cognitive, psychological and sensory interventions
- Educational and health promotion interventions
- Other and unspecified non-pharmacological interventions
- Health and community care services utilization
- Visits to health professionals
- Hospitalizations
- Community and social care
- Other health and community care
- Death
- Vital status
- Physical measures and assessments
- Physical characteristics
- Anthropometry
- Circulation and respiration
- Other physical measures and assessments
- Laboratory measures
- Hematology
- Biochemistry
- Other laboratory measures
- Cognition, personality and psychological measures and assessments
- Cognitive functioning
- Personality
- Psychological distress and emotions
- Other psychological measures and assessments
- Life events, life plans, beliefs and values
- Life events
- Beliefs and values
- Other life events, plans and beliefs
- Preschool, school and work life
- Preschool life
- School life
- Work life
- Other preschool, school or work life-related information
- Social environment and relationships
- Social network
- Social participation
- Parenting and familial environment
- Other social environment characteristics
- Physical environment
- Housing characteristics
- Other physical environment characteristics
- Light
Data dictionaries
Tables
Tables and their description
| Name | Description | |
|---|---|---|
No results for current selection |
Variables
Variables and their description
| Variable | Table | |
|---|---|---|
No results for current selection |
Subpopulations
List of subpopulations for this resource
| Name | Description | Number of participants | |
|---|---|---|---|
No results for current selection |
Collection events
List of collection events defined for this resource
| Name | Description | Participants | Start end year | |
|---|---|---|---|---|
No results for current selection |
Networks
Part of networks
Access conditions
IPEC set up a virtual databank and implemented a technical infrastructure for remote federated analysis of individual-level data of psychosis patients. With this platform, individual patient data remains stored on local servers of participating institutions and individual patient data will not be transported to one central site.
Contact IPEC via ipec@umcg.nl to receive more information about access to the virtual databank.
- Release type
- Periodically
Funding & Acknowledgements
- Funding
- IPEC was supported by the 2020 SIRS Research Harmonization Group Award which included a grant in the amount of $5000 USD to Prof. Wim Veling and Prof. Craig Morgan; an internal MD-PhD research grant of the University Medical Center Groningen (grant number 18-41) to Vera Brink, MSc; a grant in the amount of 400,000 DKK of the Capital Regions Research council to Dr Nikolai Albert; and the participating institutions (Lentis Psychiatric Institute, GGZ Drenthe, GGZ Friesland, University Center Psychiatry of University Medical Center Groningen, Bispebjerg hospital, Psychiatric Hospital Risskov, and Psychiatric Centre Copenhagen).
- Acknowledgements
- IPEC wishes to acknowledge the services of all the study participants, staff, research groups, and institutions collaborating in IPEC, and of MOLGENIS and RoQua, who helped build and maintain the technical infrastructure.