The Swiss Registry for Heart Diseases in Children Living in Switzerland. SPHC
SPHC
1 other identifier
observational
590
1 country
1
Brief Summary
The Swiss Pediatric Heart Cohort aims to collect representative longitudinal data on all children diagnosed with a clinically relevant heart disease in Switzerland. The long-term goal is to optimize diagnosis and therapy, and to allow setting up national research projects.
Trial Health
Trial Health Score
Automated assessment based on enrollment pace, timeline, and geographic reach
participants targeted
Target at P75+ for all trials
Started Jun 2019
Longer than P75 for all trials
1 active site
Health score is calculated from publicly available data and should be used for screening purposes only.
Trial Relationships
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Study Timeline
Key milestones and dates
First Submitted
Initial submission to the registry
March 29, 2019
CompletedStudy Start
First participant enrolled
June 1, 2019
CompletedFirst Posted
Study publicly available on registry
June 22, 2020
CompletedPrimary Completion
Last participant's last visit for primary outcome
December 15, 2023
CompletedStudy Completion
Last participant's last visit for all outcomes
December 15, 2023
CompletedFebruary 1, 2024
January 1, 2024
4.5 years
March 29, 2019
January 30, 2024
Conditions
Keywords
Outcome Measures
Primary Outcomes (1)
SPHC, a prospective quantitative datacollection of heart diseases in Swiss children during ten years.
This registry is a prospective data collection. It includes all patients who are newly diagnosed with a heart disease and who have consented to it. As the amount of data increases, the registry becomes more important and informative. The primarily outcome is to evaluate the quantity of congenital and acquired heart diseases in children living in Switzerland per Year compared to other countries.
Datacollection during 10 years, whereas an average incident is detected during one year
Eligibility Criteria
The population from newborns to adolescents with newly diagnosed heart disease is recorded.
You may qualify if:
- Patients with heart diseases and
- age at diagnosis between 0 and 18 years and
- resident and / or treated in Switzerland and
- signed informed consent
You may not qualify if:
- No written consent. The number of people who refuse to participate will be recorded per center for drop out analysis.
Contact the study team to confirm eligibility.
Sponsors & Collaborators
- University Children's Hospital, Zurichlead
- Ostschweizer Kinderspitalcollaborator
- Centre Hospitalier Universitaire Vaudoiscollaborator
Study Sites (1)
University Childrens Hospital Zurich
Zurich, 8032, Switzerland
Related Links
MeSH Terms
Conditions
Condition Hierarchy (Ancestors)
Study Officials
- PRINCIPAL INVESTIGATOR
Christian Balmer
PI
Study Design
- Study Type
- observational
- Observational Model
- COHORT
- Time Perspective
- PROSPECTIVE
- Target Duration
- 18 Years
- Sponsor Type
- OTHER
- Responsible Party
- PRINCIPAL INVESTIGATOR
- PI Title
- Principal Investigator Dr. Christian Balmer
Study Record Dates
First Submitted
March 29, 2019
First Posted
June 22, 2020
Study Start
June 1, 2019
Primary Completion
December 15, 2023
Study Completion
December 15, 2023
Last Updated
February 1, 2024
Record last verified: 2024-01
Data Sharing
- IPD Sharing
- Will share
- Shared Documents
- STUDY PROTOCOL
- Time Frame
- The first Data will be available 2020.
- Access Criteria
- all IPD that underlie results in a publication
Specific research projects: At the request of researchers, the SPHC is used for focused research projects. For example, a questionnaire study to patients and their parents to assess quality of life and health, or a survey to attending physicians for detailed treatment modalities. The additional data gained in these projects will be fed back into the database. Networking: In the future there is a possibility that the data of the SPHC can be networked with further registries: e.g. Swiss Birth Registry (Swiss Federal Statistical Office), Swiss National Cohort, RADIZ: Registry for Rare Diseases, Swiss Ped Net and possible further registries. Also the cooperation with the registry for adults with congenital heart diseases (GUCH Registry) is essential and an inclusion of all SPHC patients reaching the age of 18 years in the GUCH registry is anticipated.