“Our research seeks to provide all kids in the world the same opportunities to overcome leukemia”
1. What is CLOSER?
CLOSER is a research project funded by the European Union in which doctors, researchers, patients, families and supporting organizations cooperate to improve the knowledge, diagnosis and treatment of childhood leukemia.
2. There are 14 groups from 8 countries in Europe and Latin America. Why these regions?
Because the main objective of CLOSER is to find out why childhood leukemia has such a different impact on children in these regions.
3. How different?
In Europe, more than 90% of children diagnosed with leukemia survive. However, in some areas of Latin America and the Caribbean, patient survival ranges from 50% to 80%. We want to understand why there is such a huge difference and we want to overcome it.
4. Do you have any ideas already?
The explanation is multifactorial: lack of resources for research and treatment, difficulty in accessing the latest diagnostic technologies, different access to health systems, biological, ethnic causes, etc…
5. But all those factors are not controllable, right?
We cannot do much about biological or ethnic factors, but we can influence training and provide human and economic resources. CLOSER focuses on improving the diagnosis of leukemias through our network of experts, we will share the latest findings on leukemia, will train the teams and provide the necessary resources.
90% of European kids overcome leukemia, but in some areas of the Caribbean and Latin America, only 50%-80% survive
6. Why do you focus on the diagnosis of the disease?
Right now, we can diagnose childhood leukemia quickly and easily with a blood test and a microscope, but defining the subtype of leukemia is much more complex and yet it is essential.
7. Why?
Because depending on the subtype of leukemia, we will give the child a specific treatment, adapting the intensity and duration to reduce the risk of relapse of the disease and avoid toxicity. The more we know about leukemia, the better we can target it, avoiding side effects for the children.
8. And which role play the families in this project?
The role of the families is very important for a positive evolution of their children. For doctors and researchers they are essential. We have to investigate and treat the disease along with them; families live the disease with the patient, they tell us their needs and priorities and where we should investigate to also improve their quality of life.
9. So, families will be able to influence the investigation process?
Exactly! From the very beginning of the project wanted to involve them as active researchers and not only as beneficiaries. This way the research can be done much faster and the results will be better targeted to their individual cases.
10. Can you give an example?
Of course. In the place where I work, Sant Joan de Déu Hospital in Barcelona (Spain), we have a nice relationship pattern between families, doctors and researchers: in our hospital, families associations are the driving force behind all the research we do.
11. How do these associations support your research?
Public funding for research is extremely limited… Totally insufficient. The private industry provides little help to rare diseases like childhood leukemias. Therefore, without the incredible contribution of financial resources and support provided by families and foundations we would not be able to afford all the personnel needed to carry out research… Families are absolutely essential for us.
12. In other words, without them there wouldn’t be any research activity?
Certainly, in most cases we would not be able to do research without them, the role of camilies is crucial. We respect them very much, we are grateful for their help and we consider them part of our team.
The more we know about leukemia, the better we can target it and avoid side effects for the children
MIREIA CAMÓS, IN ESSENCE
My name is Mireia Camós, I hold a degree in Medicine and Surgery, I am a specialist in Hematology and Hemotherapy, and I hold a PhD in Medicine. I currently work as a senior hematologist at the Hematology Laboratory of Hospital Sant Joan de Déu in Barcelona. Since 2019, I coordinate the CLOSER research project on childhood leukemia.
I have always tried to give my best at work, in the clinics in the past and now in the lab. If I see something that can be improved, I try to improve it. Once, my boss told me, “You’re a person who makes things better wherever you go.” I think that is the nicest thing someone has ever said to me professionally, and it made me feel very proud.
Ever since I was a kid, I wanted to be a doctor. I loved seeing patients in the past, and I love doing diagnosis and research now because I feel I can somehow contribute improving patients’ lives. My job is tremendously enriching, mainly through human contact. Every day you can learn from your peers, patients, families…
In my job, you learn intellectually, but mostly as a person. It is an emotionally intense job because we deal with people in a very vulnerable situation, and in their lives there are sunny and stormy days. It motivates you to keep going, keep looking, keep moving forward.
It is inspiring and sometimes so demanding that you strt neglecting your personal life… That is something I need to improve.
I am a doctor and researcher. But I am also a woman, mother, sister, daughter, friend… I am optimistic. I believe that in the end everything will be fine.
13. You said you have a model in your hospital to explain…
Yes. We are in constant contact with family organizations. Regularly, doctors, researchers, families and foundations meet to exchange information about the progress of the project and the pending work. We also listen to their needs and proposals.
14. Can you give an example?
The family of a child who had severe side effects after chemotherapy asked us to open a specific line of research on preventing toxicity in children with leukemia. And we did it. It is an important issue. We do not only have to cure; we have to cure safely.
15. Do you keep families informed about the acrivities the money is used for?
Yes, we are very transparent. We inform them about how every euro they contributed has been spent. We share all the results of our research and answer their questions and doubts. We want them to see us by their side. We want them to know that we listen to them, that we understand them, in other words, that we are involved 100%.
Wedo not only have to cure; we have to cure safely.
16. It sounds very personal, Doctor.
For me, the contact with families is extremely enriching. This highly motivates me, not only as a doctor and researcher, but also as a human being. Only doing theoretical research without knowing the patients and families behind a study case would be quite difficult for me… Here I see a direct and practical impact of my work.
17. Is that why they were also included in CLOSER?
From the first moment we wanted to include damilies in CLOSER together with the rest of the researchers. We will move forward fasterif we help each other< this is wath this project is about – create networks on an international scale, so that information and knowledge flow to the benefit of all.
18. What does CLOSER need succeed?
CLOSER already succeeded from its start when we created these relationships between researchers, hospitals, patients, families… We connected the right people and everything started working: information exchange, learning, workgroups, etc… It is indeed a wonderful project. I am sure that we will achieve a lot of useful things.
19. You seem happy!
I am very proud of the consortium we have created. The people who form it are remarkably diverse, from entirely different countries and cultures, but they are all exceptional people and the best in their fields.
20. CLOSER ends in 2023…
The project will last for five years, but we want its CLOSER results to endure. This is why we are creating infrastructures, designing training programs and weaving international relations so that others can benefit from everything we generate and expand to other countries and regions of the world. The project end will open new doors and we will want more for sure.
Family organizations are the driving force behind research in childhood leukemia
