Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| Name | Class |
|---|---|
| Karolinska Institutet | OTHER |
Not provided
Not provided
Not provided
Not provided
The 8-12 fold higher risk for sisters and brothers of patients with Abdominal Aortic Aneurysms (AAA) to develop AAA compared to persons in the population is well known in the scientific community. Recently the value of the screening program for siblings has been analyzed and is shown to be highly cost-efficient, similar to the population based screening of 65-year old men for AAA. Most importantly detection of siblings also adresses and includes women at risk. The adult offsprings to AAA patient would hypothetically bear the same risk of AAA as siblings. This has never been evaluated scientifically due to the practical difficulties in tracking the offspring and inviting them to screening at an age when they are at risk of AAA-disease. In Sweden, the unique multigeneration registry exists which could support such detection, with the possibility to track adult offspring to patients, and investigate the true contemporary prevalence in them.
The DAAAD project aims at investigating the prevalence in adult offspring parallel to developing a model for such a selective screening program
This project will evaluate four questions
This program will evaluate the risk for AAA in adult offspring and also evaluate a highly probable effective registry-based detection route. This could be more cost-efficient than any other AAA screening program, since the prevalence presumably is very high, and the registry-based route could be cheaper than nurse-based detection or incidental screening. The ultimate benefit of this program will be a crude reduction of sudden deaths from AAA for adult offspring to AAA patients, and this will be specifically impressive for the female relatives that are never subjected to any AAA-screening in our country.
Not provided
Not provided
Not provided
Not provided
Not provided
Not provided
| Label | Type | Description | Intervention Names |
|---|---|---|---|
| Adult offspring | Adult female and male offspring to AAA patients 45-80 years of age at inclusion Children to detected AAA patients. Found in the Multigeneration registry |
| |
| Control group | Matched women and men, without parents with AAA. Matched in the Swedish Multigeneration registry |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Ultrasound and questionnaire | Diagnostic Test | One invititation to identified adult offspring to have an ultrasound to detect an AAA. The prevalence in this Group (strata for sex) will be compared to a random selected matched Control group |
| Measure | Description | Time Frame |
|---|---|---|
| Prevalence of AAA | Ultrasound or CT 30 mm aortic diameter | baseline |
| Measure | Description | Time Frame |
|---|---|---|
| Awareness of hereditability and anxiety levels | Questionnaire based information | baseline |
| Measure | Description | Time Frame |
|---|---|---|
| Feasibility of registry-based detection model for screening. | Comparison can be made with the screening program in men. The outcome here is to explore if it is possible to implement this register model nationally at reasonable cost and work load. Participation rates, detailed analysis of non-participants in the risk group vs control group. Screening models are measured as feasible if participation >50%. |
Inclusion Criteria:
Adult offspring to registered AAA parent (adult offspring) adult offspring not having a AAA parent (Controls)
-
Exclusion Criteria:
Not living in Stockholm below 45 or above 80
Stratified analysis
Random selection of Adult offspring to registered AAA parent (adult offspring) and adult offspring not having a AAA parent (Controls)
Not provided
| Name | Affiliation | Role |
|---|---|---|
| Rebecka Rebecka, professor | Karolinska Institutet | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Karolinska University Hospital | Stockholm | 17176 | Sweden |
| PubMed Identifier | Type | Citation | Retractions |
|---|---|---|---|
| 38195162 | Derived | Fattahi N, Linne A, Roy J, Stenman M, Svensjo S, Nilsson O, Hultgren R. Prevalence of abdominal aortic aneurysm (AAA) in first-degree relatives: detecting AAA in adult offspring of AAA patients. BJS Open. 2024 Jan 3;8(1):zrad163. doi: 10.1093/bjsopen/zrad163. | |
| 36503690 | Derived | Hultgren R, Fattahi N, Nilsson O, Svensjo S, Roy J, Linne A. Evaluating feasibility of using national registries for identification, invitation, and ultrasound examination of persons with hereditary risk for aneurysm disease-detecting abdominal aortic aneurysms in first degree relatives (adult offspring) to AAA patients (DAAAD). Pilot Feasibility Stud. 2022 Dec 12;8(1):252. doi: 10.1186/s40814-022-01196-9. |
Not provided
Not provided
Cannot share with patients' ID due to Ethic board regulation
Not provided
Not provided
Not provided
Not provided
Not provided
| Type | Includes Protocol | Includes SAP | Includes ICF | Document Label | Document Date | Document Uploaded Date | Document File Name |
|---|---|---|---|---|---|---|---|
| Prot_SAP | Yes | Yes | No | Study Protocol and Statistical Analysis Plan | Oct 2, 2020 | Nov 4, 2020 | Prot_SAP_001.pdf |
| ICF | No | No | Yes | Informed Consent Form | Oct 2, 2020 | Nov 4, 2020 | ICF_000.pdf |
Not provided
| ID | Term |
|---|---|
| D017544 | Aortic Aneurysm, Abdominal |
| ID | Term |
|---|---|
| D001014 | Aortic Aneurysm |
| D000783 | Aneurysm |
| D014652 | Vascular Diseases |
| D002318 | Cardiovascular Diseases |
Not provided
Not provided
| ID | Term |
|---|---|
| D014463 | Ultrasonography |
| ID | Term |
|---|---|
| D003952 | Diagnostic Imaging |
| D019937 | Diagnostic Techniques and Procedures |
| D003933 | Diagnosis |
Not provided
Not provided
Not provided
Not provided
Not provided
| One year after baseline |
| Cost Effectiveness of program measured by quality-adjusted life-years | Quality-adjusted life-years (QALYs) The prevalence in adult offspring, including cost of program, gives cost-effectiveness, probability of cost-effectiveness at different willingness-to-pay (WTP) thresholds, reduction in AAA death gained and total costs on a national scale. Presented as QUALY. | One year after baseline |
| D001018 |
| Aortic Diseases |