Congenital Adrenal HyperplasiaNCT05162950
Effects and Importance of Epinephrine/Adrenalin Deficiency in CAH
An observational study of Congenital Adrenal Hyperplasia, run by Region Stockholm at 1 site in Sweden.
Trial summary
Individuals with CAH produce lower levels of epinephrine (adrenalin) than controls. This can be correlated to the CYP21A2 genotype and is most pronounced in the classic forms. Individuals with CAH have an increased risk of developing hypoglycemia because both cortisol and epinephrine are important counter regulatory… Read more about this study
- Who is it for?
- Ages 16 to 65 yearsHealthy volunteers can take part
- Conditions the study is for
- Congenital Adrenal Hyperplasia
- What is being tested?
- physical exercise as a standardized high intensity exercise test and Stress vulnerability
- Type of treatment
- Lifestyle or therapy programme
- How many people
- 120 participants
- Where
- 1 siteSweden
- Study dates
- 1 Sep 2020to 31 Dec 2022
- Phase
- Observational
- Are there results?
- None posted in the registry
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 16 to 65 years
- All sexes
- Healthy volunteers accepted
- Child, Adult, Older adult
Study population: Men and women with congenital adrenal hyperplasia due to 21-hydroxylase deficienc. Sex and age matched controls.
Who may be able to join
- CAH due to 21-hydroxylase deficiency,
Who cannot join
- Cardiovascular disease
Trial locations and contacts
1 site in 1 country.
About this study
Individuals with CAH produce lower levels of epinephrine (adrenalin) than controls. This can be correlated to the CYP21A2 genotype and is most pronounced in the classic forms. Individuals with CAH have an increased risk of developing hypoglycemia because both cortisol and epinephrine are important counter regulatory hormones. Stress dosing is essential in situations of increased physical stress such as infections with fever for example.
Glucocorticoid treatment and stress dosing cannot compensate fully during physical stress neither for the reaction to psychological stress. This may render various types of difficulties in the individual's life.
Read more
We aim to investigate if the deficient epinephrine production can be confirmed and if it is related to the increased level of anxiety and vulnerability to stress that we observe in the patients.
Specific aims of the study:
- Analyse the epinephrine/adrenalin production in patients with CAH using measurements of epinephrine and metanephrine in blood, during an exercise test
- Assess stress vulnerability and anxiety using validated questionnaires
- Correlate the results to severity of disease, CYP21A2 genotype
- Investigate if psychological and somatic stress symptoms are related to the epinephrine production capacity.
Read the detailed description
After written informed consent study subjects, patients and controls, are invited to fill in a web based survey with the validated questionnaires. A link to the survey, expected to take 30 - 60 minutes to complete, is mailed to to the subjects . A subgroup of study subjects are invited to perform an ergo-spirometri test followed by the exercise test at the hospital. They are asked not to eat for 6 hours or drink any coffe during the day before the test. A venous catheter is used for blood sampling during the exercise. ECG, an orthostatic blood pressure test and a the ergo-spirometry test are performed before the subject is asked to do the exercise test, a cycling maximum test. Blood glucose, lactate, are followed every 4 minutes. Adrenal androgens, cortisol, insulin and methoxy-catecholamine are measured before and when the subject has reached maximum effort load and the test is ended.
The physical capacity, orthostatic blood pressure and the blood test results are related to the severity of CAH and to the maximum level of methoxy-cathecholamine produced by each individual. In the larger group of individuals, not taking part in the exercise test but completing the survey the genotype is correlated to the questionnaire results.
- Conditions
- Congenital Adrenal Hyperplasia
- Being tested
- physical exercise as a standardized high intensity exercise test, Stress vulnerability
- Medical subject headings
- Adrenal Hyperplasia, Congenital
What participants receive
What participants receive. In a randomised study each person is assigned to one group by chance.
physical exercise as a standardized high intensity exercise testDiagnostic test
High intensity exercise test, cycling, performed at the Karolinska University Hospital
Stress vulnerabilityBehavioural
Also called Validated questionnaires
Web based survey of validated psychological questionnaires measuring fatigue (MFS), exhaustion disorder (KEDS), anxiety (LSAS-SR, HADS), depression (HADS), and Karolinska sleep questionnaire
| Study group | Role | What they receive |
|---|---|---|
| SW CAH | Patients with 21-hydroxylase deficiency, salt wasting form. Receives: Diagnostic Test: physical exercise as a standardized high intensity exercise test; Behavioral: Stress vulnerability | |
| SV CAH | Patients with 21-hydroxylase deficiency, simple virilising form. Receives: Diagnostic Test: physical exercise as a standardized high intensity exercise test; Behavioral: Stress vulnerability | |
| NC CAH | Patients with 21-hydroxylase deficiency, non-classic form. Receives: Diagnostic Test: physical exercise as a standardized high intensity exercise test; Behavioral: Stress vulnerability | |
| Carrier CAH | Healthy individuals, heterozygous carriers a mutation in the CYP21A2 gene. Recruited among parents of patients with CAH. Receives: Diagnostic Test: physical exercise as a standardized high intensity exercise test; Behavioral: Stress vulnerability | |
| Control | Healthy sex and age matched controls Receives: Diagnostic Test: physical exercise as a standardized high intensity exercise test; Behavioral: Stress vulnerability |
What is being measured
The primary outcome is the main question the study is designed to answer.
epinephrine level
Measured methoxy-catecholamine at maximum exercise test, cycling test.
Measured: 2022 December 31
Secondary outcomes (5)
Hospital Anxiety Depression Scale
stress vulnerability
Measured: 2022 December 31
Mental Fatigue scale
stress vulnerability
Measured: 2022 December 31
Liebowitz anxiety scale
stress vulnerability
Measured: 2022 December 31
Karolinska Exhaustion disorder scale
stress vulnerability
Measured: 2022 December 31
sleep questionnaire
stress vulnerability
Measured: 2022 December 31
Timeline
From the start of the study to its completion; the mark is today. Estimated dates are the sponsor’s plan.
- First posted20 Dec 2021
- Study start1 Sep 2020
- Primary completion31 Dec 2022 (estimated)
- Study completion31 Dec 2022 (estimated)
Resources
- Official record on ClinicalTrials.govThe registry entry this page is built from, with its full change history.
- Other trials for Congenital Adrenal HyperplasiaStudies of the same condition, open and under way.
- More trials run by Region StockholmThe sponsor's other registered studies.
- 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
- Prospective
- Enrolment
- 120 participants (estimated)
Sponsor and investigators
- Lead sponsor
- Region Stockholm
- Sponsor type
- Other government
- Responsible party
- Principal investigator, Anna Jung Nordenstrom, Region Stockholm
- Investigators
- Fredrika Gauffin, MDPhD, Study director, Karolinska University Hospital
IDs, dates and publications
- ClinicalTrials.gov ID
- NCT05162950
- Sponsor's protocol ID
- CAH and epinephrine
- Status last verified
- Dec 2021
- First submitted
- 5 Dec 2021
- Last updated
- 11 Jan 2022
- Results posted
- No
- FDA-regulated drug
- No
- FDA-regulated device
- No
Study at a glance
From the registry record, last updated by the sponsor on 11 Jan 2022. Recruitment status is as the sponsor reported it: confirm with the study team.
- Official title
- Effects and Importance of Epinephrine/Adrenalin Deficiency in CAH
- ClinicalTrials.gov ID
- NCT05162950
- Acronym / sponsor ID
- CAH and epinephrine
- Conditions
- Congenital Adrenal Hyperplasia
- Study type
- Observational
- Recruitment status
- Unknown status
- Enrolment
- 120 participants (estimated)
- Lead sponsor
- Region StockholmOther government
- Study start
- 1 Sep 2020 (actual)
- Primary completion
- 31 Dec 2022 (estimated)
- Study completion
- 31 Dec 2022 (estimated)
- First posted
- 20 Dec 2021 (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.
Individuals with CAH produce lower levels of epinephrine (adrenalin) than controls. This can be correlated to the CYP21A2 genotype and is most pronounced in the classic forms. Individuals with CAH have an increased risk of developing hypoglycemia because both cortisol and epinephrine are important counter regulatory hormones. Stress dosing is essential in situations of increased physical stress such as infections with fever for example.
Glucocorticoid treatment and stress dosing cannot compensate fully during physical stress neither for the reaction to psychological stress. This may render various types of difficulties in the individual's life.
We aim to investigate if the deficient epinephrine production can be confirmed and if it is related to the increased level of anxiety and vulnerability to stress that we observe in the patients.
Specific aims of the study:
- Analyse the epinephrine/adrenalin production in patients with CAH using measurements of epinephrine and metanephrine in blood, during an exercise test
- Assess stress vulnerability and anxiety using validated questionnaires
- Correlate the results to severity of disease, CYP21A2 genotype
- Investigate if psychological and somatic stress symptoms are related to the epinephrine production capacity.
Detailed description
After written informed consent study subjects, patients and controls, are invited to fill in a web based survey with the validated questionnaires. A link to the survey, expected to take 30 - 60 minutes to complete, is mailed to to the subjects . A subgroup of study subjects are invited to perform an ergo-spirometri test followed by the exercise test at the hospital. They are asked not to eat for 6 hours or drink any coffe during the day before the test. A venous catheter is used for blood sampling during the exercise. ECG, an orthostatic blood pressure test and a the ergo-spirometry test are performed before the subject is asked to do the exercise test, a cycling maximum test. Blood glucose, lactate, are followed every 4 minutes. Adrenal androgens, cortisol, insulin and methoxy-catecholamine are measured before and when the subject has reached maximum effort load and the test is ended.
The physical capacity, orthostatic blood pressure and the blood test results are related to the severity of CAH and to the maximum level of methoxy-cathecholamine produced by each individual. In the larger group of individuals, not taking part in the exercise test but completing the survey the genotype is correlated to the questionnaire results.
Study design
- Observational model
- Case-control
- Time perspective
- Prospective
- Number of arms
- 5
| Arm | Type | Receives |
|---|---|---|
| SW CAH | – | Diagnostic Test: physical exercise as a standardized high intensity exercise test, Behavioral: Stress vulnerabilityPatients with 21-hydroxylase deficiency, salt wasting form. |
| SV CAH | – | Diagnostic Test: physical exercise as a standardized high intensity exercise test, Behavioral: Stress vulnerabilityPatients with 21-hydroxylase deficiency, simple virilising form. |
| NC CAH | – | Diagnostic Test: physical exercise as a standardized high intensity exercise test, Behavioral: Stress vulnerabilityPatients with 21-hydroxylase deficiency, non-classic form. |
| Carrier CAH | – | Diagnostic Test: physical exercise as a standardized high intensity exercise test, Behavioral: Stress vulnerabilityHealthy individuals, heterozygous carriers a mutation in the CYP21A2 gene. Recruited among parents of patients with CAH. |
| Control | – | Diagnostic Test: physical exercise as a standardized high intensity exercise test, Behavioral: Stress vulnerabilityHealthy sex and age matched controls |
Who may qualify
- Ages
- 16 to 65 years
- Sex
- All
- Healthy volunteers
- Accepted
- Age groups
- Child, Adult, Older adult
- Study population
- Men and women with congenital adrenal hyperplasia due to 21-hydroxylase deficienc. Sex and age matched controls.
Key inclusion criteria (1 listed)
- CAH due to 21-hydroxylase deficiency,
Key exclusion criteria (1 listed)
- Cardiovascular disease
Eligibility is decided by the study team after screening; this overview does not establish that a patient qualifies. Full inclusion and exclusion criteria.
Interventions
| Intervention | Type | Arms |
|---|---|---|
| physical exercise as a standardized high intensity exercise testHigh intensity exercise test, cycling, performed at the Karolinska University Hospital | Diagnostic test | Carrier CAH, Control, NC CAH, SV CAH, SW CAH |
| Stress vulnerabilityAlso: Validated questionnairesWeb based survey of validated psychological questionnaires measuring fatigue (MFS), exhaustion disorder (KEDS), anxiety (LSAS-SR, HADS), depression (HADS), and Karolinska sleep questionnaire | Behavioural | Carrier CAH, Control, NC CAH, SV CAH, SW CAH |
Primary outcome
epinephrine level
Time frame: 2022 December 31
Measured methoxy-catecholamine at maximum exercise test, cycling test.
5 secondary outcomes
Hospital Anxiety Depression Scale
Time frame: 2022 December 31
Mental Fatigue scale
Time frame: 2022 December 31
Liebowitz anxiety scale
Time frame: 2022 December 31
Karolinska Exhaustion disorder scale
Time frame: 2022 December 31
sleep questionnaire
Time frame: 2022 December 31
Results and safety
Results are not available in the source record.
Research links
- Official record on ClinicalTrials.govLast updated by the sponsor 11 Jan 2022.
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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.
Fredrika Gauffin, MDPhD study director
Karolinska University Hospital
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 Congenital Adrenal Hyperplasia, run by Region Stockholm at 1 site in Sweden.
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 1 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: status not confirmed, as of the sponsor's last update on 11 Jan 2022. 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 Sweden. 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?
Results are not available in the source record.
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?
epinephrine level (time frame: 2022 December 31). It is what the study was designed to measure, not a finding.
Where can I read the original study information?
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 11 Jan 2022.