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CompletedNCT02350153Updated May 3, 2019

Cushing´s Disease Epidemiology in Sweden

An observational study in Cushing Disease, sponsored by Vastra Gotaland Region. Completed at 1 site in Sweden. Open to participants aged 18 Years and older. Per ClinicalTrials.gov, last updated 2019-05-03.

Sponsored by Vastra Gotaland Region · Observational

Study type
Observational
Model
Cohort
Time perspective
Retrospective
Enrollment
502
Ages
18 Years and older
Sex
All
01

Study summary

The purpose of this study is to study since 1987 all patients diagnosed with CD in Sweden and determine their outcomes including mortality. A secondary objective is to focus on patients in remission and identify determinants of their different outcomes.

Read the detailed description

This study is a retrospective nationwide study of all patients in Sweden with diagnosis CD between 1987 and 2013 were baseline data at diagnosis, information about the different treatments and follow-up data is going to be obtained by reviewing patients' medical journals. This information as well as the exact diagnose criteria for each patient are going to be extracted by Endocrinologists in all University Hospitals in Sweden. An expert group at the Sahlgrenska University Hospital in Gothenburg will put together the data.By the use of the Swedish Personal Number, the investigators are going to obtain information about both patients' and background population co-morbidities which have been collected in the different Swedish Registers.

Primary aim:

To study mortality of CD in Sweden.

Secondary aims:

  1. To study the influence of CD on myocardial infarction
  2. To study the influence of CD on stroke
  3. To study the influence of CD on cancer
  4. To study the influence of CD on hip fracture risk
  5. To study incidence and prevalence of CD in Sweden.
02

Conditions studied

  • Cushing Disease

Keywords

  • Mortality
  • Morbidity
  • Incidence
  • Prevalence
03

In context

Pituitary ACTH Hypersecretion

58 studies on the registry are indexed under Pituitary ACTH Hypersecretion; 13 are open to participants now.

This study's enrollment of 502 is above the median of 194 across 16 observational studies indexed under Pituitary ACTH Hypersecretion.

Browse Pituitary ACTH Hypersecretion studies →

Lead sponsor

Vastra Gotaland Region is the lead sponsor of 272 studies on the registry; 107 are open to participants now.

Counted across the registry records on this site, refreshed daily.

04

Who can participate

Ages eligible
18 Years and older
Sexes eligible
All
Accepts healthy volunteers
No
Sampling method
Non-probability sample

Study population

All adult patients with confirmed CD diagnosis in Sweden

Go through the criteria one by one — yes, no or not sure — and take the list to your doctor or the study team. Kept in this browser only.

Inclusion criteria

  • All patients registered with Cushing's Disease in Sweden since 1987 in the statistical database for in- and out-patients, at the Swedish National Board of Health and Welfare will be included in the study.

Exclusion criteria

Exclusion Criteria:

  • No
05

Study design

Observational model
Cohort
Time perspective
Retrospective
Enrollment
502 participants (actual)
Patient registry
No

Groups and cohorts

  • Patients with verified Cushing's Disease

    Patients with verified Cushing's Disease

06

What researchers measure

Primary outcomes

  1. Mortality

    If event (death) has been occured during the observation period. Data obtained by the Swedish Cause Of Death Register (Swedish Board of Health and Welfare)

    Time frame: From date of diagnosis until the last day of December 2014 or date of death from any cause, whichever came first, assessed up to 20 years.

Secondary outcomes

  1. influence of Cushing's Disease on myocardial infarction

    If event (myocardial infarction) has been occured during the observation period.Data obtained by the Swedish Register of In- and Out-patient Diagnoses (Swedish Board of Health and Welfare)

    Time frame: From date of diagnosis until the last day of December 2014 or date of death from any cause, whichever came first, assessed up to 20 years

  2. influence of Cushing's Disease on stroke

    If event (stroke) has been occured during the observation period.Data obtained by the Swedish Register of In- and Out-patient Diagnoses (Swedish Board of Health and Welfare)

    Time frame: From date of diagnosis until the last day of December 2014 or date of death from any cause, whichever came first, assessed up to 20 years

  3. influence of Cushing's Disease on cancer

    If event (cancer) has been occured during the observation period.Data obtained by the Swedish Register of Cancer Diagnoses (Swedish Board of Health and Welfare)

    Time frame: From date of diagnosis until the last day of December 2014 or date of death from any cause, whichever came first, assessed up to 20 years

  4. influence of Cushing's Disease on hip fracture risk

    If event (hip fracture) has been occured during the observation period.Data obtained by the Swedish Register of Hip Fractures (Swedish Board of Health and Welfare)

    Time frame: From date of diagnosis until the last day of December 2014 or date of death from any cause, whichever came first, assessed up to 20 years

  5. incidence of Cushing's Disease in Sweden

    Validation of Data obtained by The Swedish Board of Health and Welfare by reviewing all patients' journals

    Time frame: Assessed up to 20 years.

  6. prevalence of Cushing's Disease in Sweden

    Validation of Data obtained by The Swedish Board of Health and Welfare by reviewing all patients' journals

    Time frame: Assessed up to 20 years.

07

Study locations

1 site
  • Sahlgrenska University Hospital
    Gothenburg, Västra Götaland County 413 45, Sweden
08

References and documents

Individual participant data

Plan to share: Undecided

No publications or documents are linked to this record.

09

Updates

Tracking since Sep 25, 2026
No changes since tracking began. The registry record was last updated on May 3, 2019, before this site started recording changes on Sep 25, 2026. Its history is on ClinicalTrials.gov ↗
10

Registry details

Key details

Study ID
NCT02350153
Responsible party
Sponsor
First posted
Jan 29, 2015
Start date
Sep 2013
Primary completion
Apr 2019
Completion
Apr 2019
Last update
May 3, 2019

Study contacts

Gudmundur Johannsson, Professor
principal investigator · Vastra Gotaland Region, Sahlgrenska University Hospital

Oversight

Data monitoring committee
No
View the source record on ClinicalTrials.gov ↗

Not currently enrolling

This study is completed, as verified in Apr 2019. You cannot join it, but the record below documents what was studied.

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