Sociodemographic Factors and Criminal Behaviour Preceding Neurodegenerative Disease - Retrospective Register Study (DEGERWD)

In this retrospective register study, clinically classified individuals with neurodegenerative disease from the years 2010-2021 will be verified from the clinical records from KUH and Oulu University Hospital (OUH). Based on the Finnish social security number, these individuals will be linked to the the national registers of Statistics Finland and Finnish Social and Health Data Permit Authority Findata including incomes, sociodemographic factors, education, occupation, criminal records as well as to the national registers including the bought pharmaceuticals, comorbidities and causes of death. For each study case, 10 randomly selected control cases, matched with age, sex and geographical area, will be used.

The aim of the study is to examine:

• 1) The prevalence of criminal and other disruptive behaviour in groups of different neurodegenerative diseases prior to and after the diagnosis
• 2) Changes in employment, residency,income, and marital status prior to and after the neurodegenerative disease diagnosis
• 3) Hospital diagnoses and reimbursable drugs prior to and after the diagnosis
• 4) Causes of death in patients with neurodegenerative disease to study excess mortality of the patients

Study Overview

• Status: Active, not recruiting
• Conditions: Parkinson Disease; Neurodegenerative Diseases; Amyotrophic Lateral Sclerosis; Alzheimer Disease; Lewy Body Disease; Multiple System Atrophy; Corticobasal Degeneration; Frontotemporal Dementia; Vascular Dementia; Progressive Supranuclear Palsy; Huntington Disease

• Study Type: Observational
• Enrollment (Estimated): 61292

Contacts and Locations

Study Locations

• Finland
  • Kuopio, Finland
    • Kuopio University Hospital

Participation Criteria

Eligibility Criteria

• Ages Eligible for Study: Child; Adult; Older Adult
• Accepts Healthy Volunteers: No

• Sampling Method: Probability Sample

Study Population

All consecutive patients admitted to Kuopio University Hospital (KUH) and Oulu University Hospital (OUH) Neurology outpatient clinic with a progressive neurodegenerative disease during 2010-2021 are identified from KUH and OUH data registry with all ICD-10 codes used in the diagnostics of neurodegenerative diseases. Their estimated number is 5572 patients. Clinical data of these patients are retrieved from the corresponding hospital data lakes. The patients will be divided into different diagnostic groups based on the accepted diagnostic criteria in use. Further, a matched control cohort is retrieved from the Finnish Population Information System maintained by the Digital and Population Data Services Agency. Every research patient has 10 controls matched by age, gender, and place of residency (according to the year of diagnosis), and the matching is performed for research patients that were alive at the end of the year of the diagnosis.

Description

Inclusion Criteria:

• The diagnosis of neurodegenerative disease (ICD-10) in KUH or OUH between the years 2010-2021
• Age, sex and residency matched controls (Every research patient has 10 controls matched by age, gender, and place of residency)

Exclusion Criteria:

• Patients will be divided into different diagnostic groups based on the accepted diagnostic criteria in use. If some of the formed groups contain less than 5 subjects, the disease group in question is excluded from the analyses in order to ensure the privacy protection of the subjects

Study Plan

How is the study designed?

Number of groups / cohorts

2

Cohorts and Interventions

Group / Cohort
Patients with neurodegenerative disease; Patient diagnosed with neurodegenerative disease (ICD-10 diagnosis code) between 2010-2021
Matched controls; Age, gender, and place of residency matched for those of a patient that was alive at the end of the year of the diagnosis

What is the study measuring?

Primary Outcome Measures

Outcome Measure	Measure Description	Time Frame
Criminal behaviour: Type of offence, time of offence and other disruptive behaviour	Statistics Finland, Statistics on offences and coercive measures. Criminal behaviour is investigated utilising the reports of offences received by the police. The classification of offences is based on the three- or six-numbered offence classification by Statistics Finland, which enables the examination of different offences including e.g., violence, property, and traffic offences. The data extracted from the register include the type of the offence and time. Also, other disruptive behaviour based on the captures performed by the police (e.g., captures of intoxicated persons) is extracted.	1996-2020
Hospital diagnoses	Hospital diagnoses from the National Discharge Register. The National Discharge Register contains information of all hospitalizations after 1969, including ICD-8, ICD-9, and ICD-10 classifications to detect comorbidities of the patients. Two registers, "Terveydenhuollon hoitoilmoitusrekisteri (Hilmo)" and "Perusterveydenhuollon avohoidon hoitoilmoitus (Avohilmo)" of the Finnish Institute for Health and Welfare are used.	1994-2021
Medication use	Reimbursable drugs from the Social Insurance Institution of Finland (SII). Finnish residents are covered under the National Health Insurance (NHI) scheme run by the SII. SII maintains a nationwide registry of all patients, with dispensed reimbursable drugs 1995-, including opioids and neuropathic pain medications. Data of medication use, cost, and reimbursement data are gathered from the SII database.	1995-2021
Causes of death	Causes of death from Statistics Finland. Statistics Finland maintains a registry of causes of death and death certificates, which are supplemented with data from the population information system of the Population Register Centre. Registry data are used to study excess mortality of the patients.	2010-2021
Socio-demographic data	Employment, residency, Income, Marital status. Socio-demographic outcome data is extracted from Statistics Finland, FOLK Basic data module. Possible changes in employment and residency are examined, and mortality and emigration will be considered as censoring factors	1987-2021

Collaborators and Investigators

• Sponsor: Kuopio University Hospital

Study record dates

Study Major Dates

• Study Start (Actual): January 1, 2022
• Primary Completion (Estimated): December 31, 2027
• Study Completion (Estimated): December 31, 2027

Study Registration Dates

• First Submitted: January 8, 2024
• First Submitted That Met QC Criteria: January 8, 2024
• First Posted (Actual): January 17, 2024

Study Record Updates

• Last Update Posted (Estimated): January 31, 2024
• Last Update Submitted That Met QC Criteria: January 29, 2024
• Last Verified: January 1, 2024

More Information

Terms related to this study

• Additional Relevant MeSH Terms: Mental Disorders; Cardiovascular Diseases; Vascular Diseases; Metabolic Diseases; Cerebrovascular Disorders; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Arteriosclerosis; Arterial Occlusive Diseases; Eye Diseases; Neurologic Manifestations; Neurobehavioral Manifestations; Neurocognitive Disorders; Genetic Diseases, Inborn; Neuromuscular Diseases; Parkinsonian Disorders; Basal Ganglia Diseases; Movement Disorders; Synucleinopathies; Dyskinesias; Spinal Cord Diseases; TDP-43 Proteinopathies; Proteostasis Deficiencies; Heredodegenerative Disorders, Nervous System; Tauopathies; Cognition Disorders; Cranial Nerve Diseases; Autonomic Nervous System Diseases; Ocular Motility Disorders; Language Disorders; Communication Disorders; Intracranial Arterial Diseases; Paralysis; Speech Disorders; Primary Dysautonomias; Hypotension; Frontotemporal Lobar Degeneration; Intracranial Arteriosclerosis; Leukoencephalopathies; Ophthalmoplegia; Chorea; Aphasia; Parkinson Disease; Motor Neuron Disease; Amyotrophic Lateral Sclerosis; Dementia; Alzheimer Disease; Neurodegenerative Diseases; Lewy Body Disease; Multiple System Atrophy; Shy-Drager Syndrome; Frontotemporal Dementia; Aphasia, Primary Progressive; Pick Disease of the Brain; Dementia, Vascular; Supranuclear Palsy, Progressive; Huntington Disease; Corticobasal Degeneration
• Other Study ID Numbers: DEGERWD

Plan for Individual participant data (IPD)

• Plan to Share Individual Participant Data (IPD)?: NO

Drug and device information, study documents

• Studies a U.S. FDA-regulated drug product: No
• Studies a U.S. FDA-regulated device product: No