Tamara Dangouloff : with Baby Detect, we're moving the lines!

A passionate and determined researcher, Tamara Dangouloff has swapped her nurse's coat for an ambitious and hopeful newborn screening project. Her dream? To overcome all the rare, serious but treatable genetic diseases that occur in early childhood.

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Tamara Dangouloff invited us into her office at Liège's Citadelle Hospital. An office filled with photos of newborns and young children. "I'm working on the Baby Detect project, which involves screening at birth for over 120 genetic diseases that appear in early childhood and for which there is an effective, reimbursed treatment or promising research underway. Neonatal screening in the Wallonia-Brussels Federation detects 19 serious, treatable childhood diseases. With this program, we're going much further: with a few extra drops of blood, we're currently able to detect 126

An initial pilot project launched in Liège has already resulted in the successful treatment of 19 children who might otherwise never have blown out their second candle. "Initially, I was working with Pr Laurent Servais on a rare but very serious disease, spinal muscular atrophy. In 2016, a treatment came along. It made it possible to slow down the symptoms, but it was far from sufficient. The children made little motor progress and remained in wheelchairs. In particular, a 1-year-old boy whose mother was pregnant was followed by our team. When we tested his sister at birth, we realized that she would develop the same disease. We chose to treat her just before the onset of symptoms, and her development has been perfectly normal. She is now 6 years old: she runs, she does trampolines, she rides a bike... We wanted all children to be like this little girl." Over a 3-year period, an initial pilot phase screened and treated 19 children. The emotion in the researcher's eyes is palpable. "I followed them all from birth. They walk, they go to school. Parents send me photos and videos of their first steps. It seems trivial, but it's extraordinary! 19 is a small number, but in reality, it represents a colossal change for them and their families. And this is just the beginning... "

Anything is possible

"When I was a nurse, I tried to take the best possible care of the little patients entrusted to me. With this project, we're changing scale. In the long term, we're going to be able to defeat a large number of diseases by acting earlier, which will have a considerable impact."

Currently a researcher and project manager for BabyDetect, Tamara Dangouloff has a rather atypical background. "I didn't set out to do a doctoral thesis. I began by studying nursing, then continued to train. I became head nurse and then started a thesis It's an inspiring career path, built by sheer will and tenacity. "In high school, some teachers tried to push me towards longer studies. But that wasn't what I wanted at the time. I wanted a practical job. I didn't want to spend years sitting in front of a desk. I want to tell young people that anything is possible. You can start over several times. You have the right to make mistakes, to follow your desires. You can go back to school at different times in your life. Nothing is set in stone. At every stage of my life, I was in my place. I defended my thesis just before my 40th birthday. In it, I demonstrated that by treating children before symptoms appear, newborn screening for spinal muscular atrophy not only keeps them healthy, but also saves society money."

"Anything is possible": a leitmotiv as much personal as professional. "With Laurent Servais, we're always asking ourselves how we can go further. We're always looking for ways to break new ground. We started out with an idea between two people, at the edge of a table, and then two other people joined the adventure. There have been pitfalls along the way. We thought big, very big, but we got there through sheer tenacity. And it's not over yet. The team is growing. Exchanges and collaborations are taking place with other countries. New treatments are coming on stream. Genetic screening will continue to develop. We're only at the beginning. I'm very positive about the future

Find out more about the project

Baby Detect

List of diseases currently detected

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