The DCD Research Register is an initiative to improve the depth of research into DCD in Australia. Families and individuals are able to register on to a secure database held at Victoria University, Melbourne. When a research study into DCD is approved by an Australian Human Research Ethics Committee, and details are provided to manager of the DCD Research Register, they will send out information about the study to those on the database who may be eligible to participate (this will vary based on location, age etc.). Should you wish to know more about the study, you are then able to contact the researchers directly.
Your information is never passed on to research teams directly, not to any third parties, and will not be used in any research. Expressing your interest by registering does not commit you to taking part in any project now or in the future and you may ask to be removed from the database at any time without question.
You can find more information, or register directly, here.