NederlandsTypes of congenital heart disease
We kindly refer you to the CONCOR website https://concor.net/nl/afwijkingen.html for an overview of congenital heart disease. Only these disorders are eligible for our research with Heartguard.
Storage data
Privacy is very important. Research data is therefore securely stored in the Castor management system, www.castoredc.com Research data cannot be traced back to the relevant participant. Castor is compliant with good clinical practice (GCP) guidelines and various ISO certificates, and has a strict safety statement. You can read more about this on the Castor site.
Kardia activation
If you participate in the Heartguard telecare program you might receive a Kardia device. There is a special instruction for activation, which you also receive. If you need help, please contact us.
Can friends or family use the measuring equipment?
It is not intended that friends or family members use your measuring equipment. Deviating measurement values are then recorded.
What happens with my measurements?
Normal measurement values: no action. Deviating measurement values: Your cardiologist will be contacted. If necessary, you will be contacted within a few days. If there is too much disruption, you may be requested to take a new measurement. In case of complaints you can take an extra measurement. Also state this during the measurement! Otherwise it is not clear why the measurement was made.
Does my cardiologist have direct access to my Hartwacht data?
There is a direct link with CCN’s Cardioportal electronic patient file. Work is also being done on a direct link with the EPIC electronic patient file. At present, abnormal measurement values are shared in EPIC by the physician-researcher.
Emergency situations
The Heartguard program is NOT suitable for emergency or life-threatening situations. If you do not trust the situation, you should contact us via the known route such as the doctor, first heart help or 112.
Medical questions?
Heartguard is an aid and is intended to support your cardiologist. Your cardiologist remains the point of contact for medical substantive questions and treatment.
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