If your child has one of the diseases screened for, you will have to take him to various treatment and follow-up appointments. For most diseases, your child will have to have treatment continuously, throughout his life.
Treatment must be started before signs of the disease appear. If you wait until signs appear, there might already be significant health effects for your child. In most cases, while treatment does not cure the disease, it greatly improves the quality of life of affected children.
Treatment may involve:
- following a particular diet;
- taking medications or vitamins;
- planning specialized medical follow-up.
Storage of samples and protection of privacy
Personal information about the parents and the child (e.g., name, date, place of birth) and blood and urine samples collected during screening activities will be stored in a confidential manner by the hospital centre responsible for testing.
"Normal" samples will be destroyed after 2 years, in the case of blood samples, and after 5 years, in the case of urine samples. All "abnormal" samples will be stored long term.
Information may be shared in a confidential manner between those responsible for screening and health professionals solely in order to:
- carry out further testing for the child’s benefit;
- provide the child with the care he needs;
- ensure the evaluation, quality assurance and continuous improvement of clinical services
Last update: August 29, 2018