F.A.Q.
Is it possible to be a heart donor for the Hartenbank and combine this with registration in the Donor Register?
Yes, you can be registered with the Hartenbank and simultaneously registered as an organ donor in the national donor register. When you pass away, a doctor will always have to issue a death certificate first. The doctor on site will first determine whether organ donation is possible. If the donor is eligible for organ transplantation, this takes precedence over heart procurement. Organ donation is only possible when someone dies in hospital or in an ambulance. Age also often plays a role in this. If you die outside the hospital or ambulance, heart donation to the Hartenbank is still possible.
In addition, a doctor (and not the Hartenbank) determines whether donation of skin, corneas and, in some cases, other tissues is possible. It is possible to combine heart donation to the Heart Bank with skin and cornea transplantation (and some other tissues). If so, the doctor will register the donor with the Nederlandse Transplantatie Stichting (NTS). An employee of the NTS will then come to the VU (Amsterdam) to remove the donation material. This will take place immediately after the heart has been removed.
Is it possible to combine a heart donation to the Hartenbank with making it available to science?
It is not possible to combine heart donation to the Heart Bank with donating your body to medical science.
Do any changes need to be made to the funeral arrangements? And are there any costs involved?
The answer to both questions is no. The autopsy does not interfere with the normal procedure of burial or cremation, as the body is returned to the next of kin after one day (after collection of the deceased). In exceptional cases, this takes two days. The costs of transport and the post-mortem examination are borne by the Hartenbank. We work closely with a funeral director who carefully arranges the transport of the deceased. Transport is by funeral transport (the deceased is then dressed in a white robe). The family members indicate where the deceased can be transported after the autopsy. The costs of the viewing, funeral or cremation remain with the next of kin.
What happens to the heart tissue after donation?
After the cardiac autopsy, the material is stored at the Durrer Centre, the biobank department of the Netherlands Heart Institute. This biobank is located at Amsterdam UMC, AMC location. During the autopsy, a standard protocol is used, whereby some parts of the heart are frozen and other parts are fixed with a fixative (formalin) and thus preserved. The frozen material is stored in -80°C freezers.
To ensure that heart tissue is distributed for research in a responsible and efficient manner, a distribution review committee will assess each application in terms of practical and scientific quality.
How is my privacy guaranteed?
The Hartenbank complies with the rules of the General Data Protection Regulation. The heart material and accompanying medical data are encrypted (without the donor being identifiable) and released for scientific research. All data collected during your lifetime and after your death is stored in encrypted form in a secure database.
Permission
You may withdraw your consent to donate your heart and personal data to the Heart Bank for scientific research at any time. Your data will be deleted after you withdraw your consent. Click here for the form to withdraw your consent.
Is it possible to be both a heart donor with the Hartenbank and a brain donor with the Hersenbank?
Yes, this is possible. In addition to donating your heart via the Heart Bank, you can donate your brain via the Dutch Brain Bank (https://www.hersenbank.nl). If you are interested in doing so, you must register separately with the Netherlands Brain Bank. The Heart Bank and the Netherlands Brain Bank are separate organisations but work closely together. The removal of the heart and brain takes place simultaneously at the Amsterdam UMC, VUmc location.
Has any tissue been released for scientific research?
In some cases, it is possible to combine heart donation to the Hartenbank with donating your body to medical science. Each medical centre has drawn up its own guidelines for this. An overview of these guidelines will soon be available on our website. Would you like to know more about this in relation to your specific case? Please send an email to info@hartenbank.nl.
Is tissue from a person with PLN used solely for research into the heart muscle disease PLN?
Yes. For research into the heart muscle disease PLN, it is very important that healthy heart tissue and tissue from other heart diseases are also available for scientific research. It is precisely the insight into the differences between heart tissue with a PLN mutation, healthy heart tissue and heart tissue from people with other heart diseases that is important for further unravelling the “PLN fingerprint” and the different stages of PLN. A researcher who, for example, is conducting primary research into inflammation in the heart muscle and requests tissue from the Hartenbank for this purpose, may therefore be advised to also examine pieces of heart tissue from PLN carriers. This will provide a better picture of the differences and similarities between the clinical pictures and enable the “PLN fingerprint” to be further unravelled. Tissue from a donor with a PLN mutation will thus contribute both directly and indirectly to further unravelling PLN-related heart diseases.
I will soon be undergoing a heart transplant. Can I donate my heart to the Hartenbank?
Yes, if you register as a donor with the Hartenbank, your heart will be stored together with your medical records for medical research after your death.
After a heart transplant, the diseased heart that has been removed is examined at the transplant centre and the tissue is preserved. The Hartenbank is exploring the possibilities of making heart tissue from people who have undergone a heart transplant available to researchers via the Hartenbank. As soon as more information is available, we will provide current and future donors with detailed information via our channels (including our newsletter and website).
It is possible that upon the death of a donor, the Hartenbank may decide not to proceed with the donation. Unfortunately, in a number of situations, heart donation cannot take place:
- If an autopsy cannot be performed due to logistical problems.
- If the donor has a (contagious) disease that could pose a risk to the autopsy team.
Is er al weefsel uitgegeven voor wetenschappelijk onderzoek?
The first cardiac autopsies took place in 2021 and 2022. More than 10 autopsies have now been performed. We are, of course, extremely grateful to the next of kin for their cooperation.
And good news: the first heart tissue has now been issued for scientific research to a researcher at UMC Utrecht. In addition, discussions are ongoing with researchers who are interested in tissue from the Hartenbank.
You can find more information here more information here about how researchers can request tissue from the Hartenbank.
How do I register?
Registering with the Hartenbank consists of two steps: signing up and registering. You sign up by requesting the information and consent forms, which you can request here, which you can request here.
If you have any questions after receiving the information and consent forms, please feel free to contact us at
info@hartenbank.nl ior by telephone on 088-2333 699. If you have decided that you want to register as a future donor, you must sign the consent forms and return them to the Hartenbank using the enclosed return envelope. If you do not return this consent form signed, you will receive a one-time reminder. If there is no response, your data will be deleted after 1 year.
