Neurodegenerative DiseasesDEGERWDNCT06209515
Sociodemographic Factors and Criminal Behaviour Preceding Neurodegenerative Disease - Retrospective Register Study
An observational study of Neurodegenerative Diseases and Alzheimer Disease, run by Kuopio University Hospital at 1 site in Finland.
Trial summary
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). Read more about this study
- Who is it for?
- Any age
- Conditions the study is for
- Neurodegenerative Diseases, Alzheimer Disease, Frontotemporal Dementia
- How many people
- 61,292 participants
- Where
- 1 siteFinland
- Study dates
- 1 Jan 2022to 31 Dec 2029
- Phase
- Observational
- Are there results?
- Not yet: the study is under way
Key requirements
Who can take part, as listed by the sponsor. Only the study team can confirm whether you are eligible, so take this list to your doctor.
- Ages Any age
- All sexes
- No healthy volunteers
- Child, Adult, Older adult
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.
Who may be able to join
- 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)
Who cannot join
- 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
Trial locations and contacts
1 site in 1 country.
About this study
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
- Conditions
- Neurodegenerative Diseases, Alzheimer Disease, Frontotemporal Dementia, Lewy Body Disease, Vascular Dementia, Parkinson Disease
- Medical subject headings
- Neurodegenerative Diseases, Alzheimer Disease, Frontotemporal Dementia, Lewy Body Disease, Dementia, Vascular, Parkinson Disease, Supranuclear Palsy, Progressive, Corticobasal Degeneration
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
| Study group | Role | What they receive |
|---|---|---|
| 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 being measured
The primary outcome is the main question the study is designed to answer.
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.
Measured: 1996-2020
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
Measured: 1987-2021
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.
Measured: 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.
Measured: 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.
Measured: 2010-2021
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted17 Jan 2024
- Study start1 Jan 2022
- Primary completion31 Dec 2029 (estimated)
- Study completion31 Dec 2029 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Publications (1)Papers the sponsor has linked to this study.
- Other trials for Neurodegenerative DiseasesStudies of the same condition, open and under way.
- What the trial phases meanHow a treatment moves from first tests in people to approval.
More details
For doctors and researchers: how the study is designed, who runs it, and its registry IDs.
Study design
- Study type
- Observational
- Observational model
- Case-control
- Time perspective
- Retrospective
- Enrolment
- 61,292 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Kuopio University Hospital
- Sponsor type
- University, hospital or other
- Responsible party
- Sponsor
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT06209515
- Sponsor's protocol ID
- DEGERWD
- Acronym
- DEGERWD
- Status last verified
- Aug 2026
- First submitted
- 8 Jan 2024
- Last updated
- 10 Aug 2026
- Results posted
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
- Individual data sharing
- No
Publications
Kivisild A, Aaltonen M, Aho K, Heikkinen SV, Lehtonen A, Leppanen L, Rinnankoski I, Tervonen L, Soppela H, Haapasalo A, Martikainen J, Hartikainen PH, Katisko K, Kruger J, Solje E. Long-Term Income and Productivity Losses in Individuals With Early-Onset Dementia: Evidence From 15 Years Preceding the Diagnosis. Neurology. 2026 Aug 11;107(3):e218268. doi: 10.1212/WNL.0000000000218268. Epub 2026 Jul 8.
PubMed 42418748
Study at a glance
From the registry record, last updated by the sponsor on 10 Aug 2026. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Sociodemographic Factors and Criminal Behaviour Preceding Neurodegenerative Disease - Retrospective Register Study
- ClinicalTrials.gov ID
- NCT06209515
- Acronym / sponsor ID
- DEGERWD / DEGERWD
- Conditions
- Neurodegenerative Diseases, Alzheimer Disease, Frontotemporal Dementia, Lewy Body Disease, Vascular Dementia, Parkinson Disease
- Study type
- Observational
- Recruitment status
- Active, not recruiting
- Enrolment
- 61,292 participants (estimated)
- Lead sponsor
- Kuopio University HospitalUniversity, hospital or other
- Study start
- 1 Jan 2022 (actual)
- Primary completion
- 31 Dec 2029 (estimated)
- Study completion
- 31 Dec 2029 (estimated)
- First posted
- 17 Jan 2024 (actual)
- Results
- Not posted in the source record
Clinical summary
The research question as the sponsor registered it. This describes what the study plans to test, not what it found.
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 design
- Observational model
- Case-control
- Time perspective
- Retrospective
- Number of arms
- 2
| Arm | Type | Receives |
|---|---|---|
| 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 |
Who may qualify
- Sex
- All
- Healthy volunteers
- Not accepted
- Age groups
- Child, Adult, Older adult
- 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.
Key inclusion criteria (2 listed)
- 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)
Key exclusion criteria (1 listed)
- 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
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Primary outcome
Criminal behaviour: Type of offence, time of offence and other disruptive behaviour
Time frame: 1996-2020
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.
Socio-demographic data
Time frame: 1987-2021
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
Hospital diagnoses
Time frame: 1994-2021
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.
Medication use
Time frame: 1995-2021
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.
Causes of death
Time frame: 2010-2021
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.
Results and safety
This study is still under way. Results are not available in the source record yet.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 10 Aug 2026.
- Derived from this study: PubMed 42418748Kivisild A, Aaltonen M, Aho K, Heikkinen SV, Lehtonen A, Leppanen L, Rinnankoski I, Tervonen L, Soppela H, Haapasalo A, Martikainen J, Hartikainen PH, Katisko K, Kruger J, Solje E. Long-Term Income and Productivity Losses in Individuals With Early-Onset Dementia: Evidence From 15 Years Preceding the Diagnosis. Neurology. 2026 Aug 11;107(3):e218268. doi: 10.1212/WNL.0000000000218268. Epub 2026 Jul 8.
- Individual participant dataSharing planned: No
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Referral and contact
AzTrials does not enrol participants or take referrals. Contact the study team or a site listed below; they decide who can take part. This study is not recruiting at the moment.
The record lists no contact. Use the official record to reach the sponsor.
1 site in 1 country: see every site and its status.
Questions about this trial
What is this clinical trial studying?
An observational study of Neurodegenerative Diseases and Alzheimer Disease, run by Kuopio University Hospital at 1 site in Finland.
The full registered description is in the About this study section and the official record.
Who may be eligible to take part?
The sponsor lists 2 inclusion and 1 exclusion criteria. Eligibility is decided by the study team after screening, so read the full criteria and contact a listed site.
Is this clinical trial currently recruiting?
The record says: under way, not looking for participants, as of the sponsor's last update on 10 Aug 2026. Status can change between updates, so confirm with the study contact before making plans.
Where is the study taking place?
The record lists 1 site in Finland. Whether a site is taking part right now should be confirmed with that site. See every site.
What are the possible benefits and risks?
They depend on the study and the treatment, and no study can promise a benefit. The study team explains the known risks during informed consent, before anyone joins; the record itself does not list them.
Are results available for this study?
This study is still under way. Results are not available in the source record yet.
How can a doctor refer a patient or contact the research team?
The record lists no contact. The official record names the sponsor, who can be asked directly. AzTrials does not enrol participants or take referrals.
What does the primary outcome measure?
Criminal behaviour: Type of offence, time of offence and other disruptive behaviour (time frame: 1996-2020). The study lists 5 primary outcomes in all. It is what the study was designed to measure, not a finding.
Where can I read the original study information?
On the ClinicalTrials.gov record for NCT06209515, which also lists 1 linked publication.
Does a listing mean the treatment is approved or proven to work?
No. A listing means the study is registered. It does not show that the treatment is safe, works, or is approved by a regulator.
How often is this information updated?
AzTrials copies changed records from ClinicalTrials.gov every night and reloads the whole registry every week. The sponsor last updated this record on 10 Aug 2026.