Children's participation in the population Biobank

The population Biobank collects biological samples not only from adults but from children of all age groups. Children's participation in the Biobank is of enormous value to medical science in its effort to better understand the development of human health across the entire lifespan.

Why is it important to take part in the Biobank together with children?

It is precisely the early years of life that have an enormous impact on a person's health later in life. The earlier the collection of biological data and other health information begins, the better scientists can understand the causes of diseases, how they develop, and the possibilities for preventing them in both children and adults.

  • Early biological indicators can help scientists better understand the development of various diseases and health conditions common among the Lithuanian population (such as obesity, diabetes, cardiovascular diseases, and endocrine, immune and other health disorders).
  • Long-term data make it possible to observe how health changes as a child grows and how various environmental, lifestyle and genetic factors influence this.
  • Collecting children's samples in the Biobank is especially important for research into rare diseases, because many rare diseases are genetic in origin and appear in childhood. This is an opportunity to seek ways of diagnosing rare diseases early and to develop more targeted treatment methods. The more data on children's health is gathered, the greater the likelihood of speeding up the recognition of rare diseases and of helping families.

From what age can a child become a Biobank participant?

Children of all age groups (from birth to 18 years of age) can become participants in the population Biobank with the consent of both parents or guardians.

The decision about a child's participation in the Biobank is made by their parents or guardians. As the child grows, it is important also to take into account the child's own opinion about taking part in the Biobank.

In line with the good practice of the European Biobanking and Biomolecular Resources Research Infrastructure (BBMRI-ERIC), children from around the age of 7 should express their informed assent to participating in the Biobank. Information about the Biobank adapted for children can be found here.

Children, like adults, are active participants in the Biobank, and their opinions and feelings are no less important. Therefore, children's opinions about participating in the Biobank must be taken into account according to their age and maturity.

This ensures that children's rights, opinions and privacy are respected, while at the same time giving children, as a very important group in society, the opportunity to contribute to the advancement of medical science.

Upon reaching adulthood, Biobank participants will be able to decide for themselves whether they wish to continue taking part in the Biobank.

Taking blood samples for the Biobank – a quick, safe and simple procedure

The amount of blood taken depends on the child's age and body weight and does not exceed the amounts normally used for diagnostic tests.

When taking a child's sample for the Biobank, the usual amount of blood collected is:

  • For infants – a few drops
  • For young children – a small amount (about 5 ml, or roughly a teaspoon)
  • For older children – a proportionally larger amount, but one that is safe and standard in clinical practice

How often will samples be taken?

In order to study changes in health over time, children's samples are collected in the Biobank at several stages of life. This gives scientists the opportunity to analyse how health and disease develop during different periods of human development.

Preliminary sample-collection stages by the child's age:

  • Infancy (up to 1 year)
  • Early childhood (around 2 years)
  • Preschool age (around 5 years)
  • School age (around 10 years)
  • Adolescence (around 15 years)
  • Adulthood (18 years)

Data security and confidentiality

All biological samples and other health information collected in the population Biobank are gathered, stored and used for scientific purposes in accordance with the strictest ethical and security requirements. The collected data is kept securely in Vilnius University's data repositories.

All biological samples and related health data are pseudonymised – this means that each Biobank participant is assigned a unique code, while information revealing their identity is stored separately under strict security measures. Researchers carrying out studies work only with coded data and have no access to the identity of the Biobank participant.

How to register a child?

Once a decision has been made about participating in the Biobank, we invite you to fill in the Biobank participant registration form on our website.

  • The registration form is completed in the child's name, entering the child's details and providing the other requested information
  • When registering a child as a Biobank participant, both parents (guardians) sign the consent for their child, as an informed person, to take part in the Biobank

If a minor is being registered as a Biobank participant, their Biobank registration form is in all cases completed by their parents or guardians. If the child being registered is aged 7 or over, we recommend that, before registering with the Biobank, the child is introduced to information about the Biobank and that the child's opinion about taking part is taken into account.

Consent to participate in the Biobank can be withdrawn at any time by contacting the Biobank. Once consent is withdrawn, the collected biological samples will be destroyed and the data deleted.

Children's participation in the Biobank means empowering science

Assoc. Prof. Dr. Karolis Ažukaitis

Vice-Dean for Science and Innovation at the Faculty of Medicine of Vilnius University, board member of the European Society for Paediatric Nephrology

Children's participation in the population Biobank is very important for several reasons. First of all, children have a unique biology and physiology that also changes greatly at different ages: the health characteristics of a newborn are one thing, while those of a three-year-old, an eight-year-old or a fifteen-year-old are entirely different.

In addition, in childhood the body has not yet been affected by many of the long-term external factors (lifestyle, environment, chronic diseases) that often make it harder to determine the causes of disease in older people.

Despite this, in medical science we still know comparatively little about how children's bodies develop and about the mechanisms by which diseases form. Children's participation in medical research is very limited and truly insufficient. This is not only a huge gap in medical science, but it also deprives children themselves of the chance to gain real benefit from medical science.

That is why children's participation in the population Biobank gives us the opportunity to empower the science of children's health and to understand much better how and why certain diseases develop.

How to help your child prepare for a blood test?

Assoc. Prof. Dr. Sigita Burokienė

Paediatrician at the "Empatija" Children's and Youth Clinic

Taking a child's blood sample for the population Biobank is usually a quick and simple procedure. What matters most is good preparation and calm parents, because their emotions are very easily passed on to the child.

What is important to know?

  • Thinner and less painful needles are used for children.
  • If needed, local anaesthesia with a special cream can be applied.
  • The procedure takes only a few minutes.
  • The amount of blood taken is small – just as for routine preventive blood tests.

Usually it is not the blood-drawing procedure itself that causes greater anxiety, but the uncertainty. That is why the most important thing is to explain calmly and simply to the child what will happen.

  • Talk to your child openly and simply. Explain that the specialist will take a little blood, which will help science and everyone's health. Avoid frightening words.
  • Even if you are anxious yourself, try not to show it – children react very sensitively to their parents' emotions.
  • Use whatever helps your child calm down. This could be a favourite toy or blanket, a story or a game, a short video on the phone, holding hands or a hug.
  • Distract their attention. Counting, telling stories, breathing games or simple conversation help to reduce tension.
  • Praise and encourage. After the procedure, be sure to praise your child. A small treat or a symbolic prize can reinforce the positive experience. It is important for the child to feel that they have done something important – and taking part in the Biobank truly is a meaningful contribution to science.