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 | History and structure | index |
The Italian Neuroblastoma Association (Associazione Italiana per la lotta al Neuroblastoma O.N.L.U.S.), a non-profit organisation, was founded on 23rd July 1993 on the initiative of parents of sick children and oncologists at Genoa’s G. Gaslini Children's Hospital. The hospital’s Department of Paediatric Haematology and Oncology is the main point of reference in Italy for the study and therapy of neuroblastoma, a tumour affecting patients of paediatric age.
On 26th April 1994, the Association was granted recognition as a legal entity by the Italian Republic through a decree issued by the Ministry of Health.
The Association has over 100,000 members. Its Management Committee is made up of: a President, Dr. Sara Costa; a Vice- president, Dr. Vito Pistoia; and three councillors: Dr. Edoardo Lanino, Avv. Elisa Barone, and Mr. Filippo Leo.
In addition, it has a Review Board, which is made up of Dr. Simone Mainardi, Dr. Paola Mastria and Dr. Barbara Zanotti.
The Association's main objectives are:
- to support scientific research into the therapy of neuroblastoma and solid tumours in children, with a view to developing new treatment options;
to support both senior and junior researchers through the granting of contracts for scientific projects;
to promote and finance professional training;
to provide laboratories with state-of-the-art equipment;
to update the Neuroblastoma Registry, which currently contains more than 3000 cases;
to develop and consolidate the Research Laboratory on Neuroblastoma and Paediatric Solid Tumours, which has been operating since 1994 in the sectors of biology, genomics, genetics, biostatistics, immunotherapy and the development of new diagnostic technologies;
- to support work in advanced diagnostics, in order to enable therapy to be tailored to the characteristics of the individual child;
- to support scientific research on Paediatric Brain Tumours – the “Pensiero” project. | | |
The Italian Neuroblastoma Foundation (Fondazione Italiana per la Lotta al Neuroblastoma – Onlus), an important source of support for research into neuroblastoma and paediatric solid tumours, has obtained legal recognition.
To find out about its aims, see its Statute.
The Foundation’s Board of Directors is made up of:
 DOTT.SSA SARA COSTA | President | | |
| DOTT. FILIPPO LEONARDO | Vice-president | | |
| DOTT. EDOARDO LANINO | Representative of the NB Association | | |
| DOTT. GIANBENEDETTO NOBERASCO | | | |
| DOTT.SSA LUCIA LORO PIANA | | | | | | | | | The main objective of the Foundation is to develop and consolidate the Oncologic Centre for Research on Neuroblastoma and Paediatric Solid Tumours at an international level. |
| The Oncologic Centre for Research on Neuroblastoma and Paediatric Solid Tumours | index |
Consolidation and development of all areas of basic and clinical research.
Origins and history
In Italy, the study of neuroblastoma began at G. Gaslini Children's Hospital in Genoa towards the end of the 1970s, when Dr. Bruno De Bernardi observed and treated the first neuroblastoma patients. In the following years, Dr. De Bernardi’s tireless dedication led him to realise the importance of the role of biology in the treatment of neuroblastoma. Since 1984, this aspect of neuroblastoma therapy has been handled by Dr. Gian Paolo Tonini, whose scientific commitment was fundamental in drawing up the clinical protocols that are still implemented today.
Thus, in addition to being the “cradle” of Italian neuroblastoma studies, Genoa also possesses a patrimony of biological and genetic knowledge in this field which is unequalled in Italy. A precious contribution to this knowledge has also been made by the researchers and clinicians involved in these studies: Alberto Garaventa, Massimo Conte, Paolo Montaldo, Katia Mazzocco, Vito Pistoia, Luigi Varesio, Jean Michon, Manfred Schwab, Andy Pearson and many other European researchers.
Since the 1990s, a fundamental role has been played by the Italian Neuroblastoma Association (Associazione Italiana per la Lotta al Neuroblastoma O.N.L.U.S.), which, through the Neuroblastoma Foundation, has financed, and continues to finance, young researchers both in Italy and abroad.
At the end of the 1990s in Genoa, the G. Gaslini Institute, the National Cancer Research Institute (IST) and the Centre for Advanced Biotechnologies were carrying forward important lines of work in diagnostics, clinical medicine and research. In addition to considerable financing, these activities needed to be co-ordinated in order to optimise the use of the resources available, a necessity which gave rise to the idea of the Oncologic Centre for Research on Neuroblastoma and Paediatric Solid Tumours.
This idea has now become a reality in the form of the "Research Laboratory on Neuroblastoma", which is currently located at the IST in Genoa. The work of this group has yielded a very important result in the field of genetics by identifying the ALK gene, the first gene associated with the development of familial neuroblastoma. This study was conducted by Dr. Patrizia Perri, the first Italian “brain” that the Association induced to return from abroad in order to apply her specific experience to neuroblastoma research; the project was subsequently carried forward by Dr. Luca Longo.
In this regard, it should be pointed out that many Italian researchers who are currently working abroad would willingly return to Italy if they were given adequate recognition.
The Foundation's mission is to achieve a complete understanding of the biology of neuroblastoma in order to develop the therapies needed to cure these tumours. This objective can be reached by consolidating and developing the Centre, which is the hub of a network of at least 100 researchers – biologists, geneticists and clinicians – 42 of whom hold contracts with the Foundation.
Through close collaboration between the Foundation and researchers, the Centre carries out research in the following areas:
Biology: cell death and the induction of maturation of neuroblastoma cells;
Genetics: the study of candidate genes for the development of neuroblastoma;
Markers of tumour progression: the detection of genetic alterations that may be able to predict the development and progression of the disease;
Clinical medicine: the development of national and European clinical protocols tailored to the individual patient; these involve various specialists: pathologists, radiologists, biologists, pharmacologists, etc;
Statistics: epidemiological studies of the disease and assessment of the efficacy of clinical treatment protocols;
Animal models: the development of animal models for the study of neuroblastoma;
Experimental pharmacology: testing new drugs on neuroblastoma cell cultures and on animals;
Immunotherapy: investigation of the relationships between the immune system and tumour development;
Gene therapy: research into models of gene therapy to inhibit the development of neuroblastoma
Genome: study of the genome and of gene expression by means of new technologies, such as that of the microarray.
This project requires considerable financing (in the order of millions of euro) to pay for scientific equipment, consumable materials and, especially, the contracts of the Italian researchers and also of those working abroad who wish to bring their expertise back to Italy.
| | This project requires considerable financing (in the order of millions of euro) to pay for scientific equipment, consumable materials and, especially, the contracts of the Italian researchers and also of those working abroad who wish to bring their expertise back to Italy. | | |
| The Research Laboratory on Neuroblastoma | index |
The Italian Neuroblastoma Foundation's Laboratory (NB-LAB) was established in 1994, when the Italian Neuroblastoma Association decided to undertake the difficult task of setting up its own independent laboratory dedicated to neuroblastoma research. The aim was to create a fully equipped scientific research facility that could house researchers working specifically on the study of neuroblastoma. The area designated for this purpose was Tower 3B of the National Cancer Research Institute (IST) in Genoa. Since 1995, the NB-LAB has acquired the basic and specialised equipment needed to carry out its research work and has seen a turnover of numerous researchers. Several students graduating in biological sciences who have presented experimental theses have attended the NB-LAB. The NB-LAB has also been attended by two foreign doctors, from Ukraine and Poland. Since 1995, it has been the national reference centre for molecular diagnostics in neuroblastoma and, in the person of its director, a member of the European group SIOPEN (Société Internationale Oncologie Pédiatrique Européenne Neuroblastoma) for the development and validation of prognostic factors in European neuroblastoma protocols. In addition, it is the reference laboratory of the AIEOP (Italian Association of Paediatric Haematology and Oncology).
Over the years, NB-LAB researchers have been responsible for, or taken part in, several research projects. They have published numerous papers in international scientific journals with high impact factors and have participated in national and international congresses, often as guest speakers.
It can justifiably be claimed that the NB-LAB has gained both national and international recognition through its primary role in the area of basic and translational neuroblastoma research. Over the years, the NB-LAB has acquired and consolidated several skills, particularly in the fields of molecular diagnostics, genomics, the identification of candidate genes and the diagnostic application of innovative nanotechnologies. Moreover, it should be underlined that, within a few years of the establishment of the NB-LAB, its researchers participated in the discovery of the ALK gene, the first gene associated with the development of familial neuroblastoma. This discovery constituted an important step towards understanding the development of this tumour and laid the foundations for future therapy with pharmacological ALK gene inhibitors.
Staff:
Dr. Gian Paolo Tonini – Director
National Cancer Research Institute (IST)
Field: Paediatric Oncology, Molecular Biology Dr. Katia Mazzocco – Senior Researcher
Italian Neuroblastoma Foundation
Field: Molecular Biology Dr. Raffaella Defferrari - Senior Researcher
Italian Neuroblastoma Foundation
Field: Biology/Genetics Dr. Luca Longo - Senior Researcher
Italian Neuroblastoma Foundation
Field: Molecular Genetics Ms. Silvia De Luca – Administrative Support
Italian Neuroblastoma Foundation Dr. Alessandro De Ambrosis – Director
National Cancer Research Institute (IST)
Field: Molecular and Cellular Biology Ms. Carla De Vecchi – Technical Assistant
National Cancer Research Institute (IST) Dr. Paola Scaruffi – Senior Researcher
National Cancer Research Institute (IST)
Field: Molecular Biology Dr. Simona Coco – Senior Researcher
National Cancer Research Institute (IST)
Field: Molecular Biology Dr. Marta Terrile – Junior Researcher
Italian Neuroblastoma Foundation
Field: Molecular Biology Dr. Marilena De Mariano – Junior Researcher
Italian Neuroblastoma Foundation
Field: Molecular Biology Dr. Sara Stigliani – Junior Researcher
National Cancer Research Institute (IST)
Field: Pharmacology
Dr. Francesca Valdora – Research doctorate
Italian Neuroblastoma Foundation
Field: Molecular Biology | | |
| Centralisation of neuroblastoma samples: a fundamental tool in the diagnosis and study of the disease by Andrea di Cataldo. | index |
| Regional Reference Centre for Paediatric Haematology and Oncology, Polyclinic – University of Catania. Neuroblastoma is an odd tumour, unique and multifaceted. Although it is tirelessly studied by numerous authoritative scientists throughout the world, some of its important aspects remain elusive. We do not yet understand why this disease is sometimes extremely grave, while in other cases it has a totally benign behaviour. Indeed, many children suffering from neuroblastoma cannot be cured even by massive therapy. By contrast, others respond well to treatment and are easily cured; others again recover without treatment, as the tumour gradually shrinks spontaneously and disappears, and finally, in some cases, the disease is so benign that it does not even manifest itself at all. Understanding the reason for this highly diverse behaviour will help us to find the right therapy for the most difficult cases, which are, unfortunately, in the majority.
In Italy, children suffering from neuroblastoma are treated in paediatric oncology centres in all regions of the country, from Sicily to Lombardy and from Sardinia to Veneto, all of which have adequate facilities and good doctors. To diagnose neuroblastoma accurately, numerous investigations are required; some are highly sophisticated and costly, and are performed only in a few centres.
Two alternatives can therefore be envisioned:
1. treat all of the children in the 2 or 3 Italian centres that are able to carry out all the investigations; this, however, would mean depriving these children of a normal life: they would no longer be able to see relatives and friends, attend school or play in the streets of their hometown; they would miss out on many of the joys which, in spite of their illness, they could still experience;
2. arrange for the children to stay in the centre closest to home … and make the tumour travel ! It sounds like fantasy, but it's not.
We have chosen this second option, and it works. Let me now explain why the tumour has to travel and, especially, how this is possible.
Let’s look at an example: in the Catania centre, where I work, a child is hospitalised with a suspected neuroblastoma. First, we perform the initial examinations: echography, radiography, CT scan, magnetic resonance imaging and scintigraphy. Then, together with the surgeons, we decide that the child can undergo surgery to remove the tumour, either entirely or partially. We also take a sample of bone marrow, which, in neuroblastoma, is often infiltrated by tumour cells. The tumour is then sent to our pathologist, who studies it under the microscope and confirms that it is indeed a neuroblastoma. For us and for the child's family, however, it is important that this diagnosis be confirmed by another pathologist who is particularly expert in this disease. That's why the tumour has to travel ! Not only will the diagnosis be more certain and complete; in this way, we can also build up an archive containing hundreds of cases of neuroblastoma. Studying these will enable us to find out more about the nature of the tumour.
To treat that child with neuroblastoma properly, I need more information about the individual tumour cells. Indeed, not all the cells are the same; some are more aggressive and can grow and proliferate more rapidly, and are able to withstand therapy. I need to know what type of cells make up the neuroblastoma of the child I am treating, so that I can choose the most suitable therapy. But these studies are not only performed for this reason. Unfortunately, I am aware that I will not yet be able to cure the most difficult cases, even if I get to know them as well as I can. Sooner or later, however, the ongoing study of these cells will enable us to discover why neuroblastoma is sometimes so aggressive and how we can make it curable. This is another vital reason why the neuroblastoma has to travel. A part of the tumour will therefore be sent to highly expert biologists. The bone marrow will also be sent for expert analysis so that we can build up our knowledge of this disease.
As we paediatric oncologists all send a sample of every case of neuroblastoma to a single centre, the expert pathologists and biologists at the centre receive a large quantity of tumour material from all over Italy, which enables them to carry out research into this disease.
But sending in this material is no simple task. If it is not done properly, the cells may be lost or ruined. Moreover, it is expensive, since state regulations, quite rightly, do not allow blood, bone marrow or tumour tissue to be sent through the post in ordinary packages; imagine what would happen if a test-tube of blood or bone marrow were to break while being handled by the postman ! In addition, the managers of our hospitals, especially in these times of economic recession, are unwilling to take on these extra costs; rightly or wrongly, that is the situation!
The Italian Neuroblastoma Foundation has been successfully dealing with this complex problem for several years now. At the outset, the Foundation took on staff capable of conducting the studies required, and created or upgraded the facilities needed. It also provided all the centres in Italy with large metal containers, called biocases, inside which different temperatures can be maintained; these biocases act both as freezers for the transport of tumour tissue and as refrigerators for the transport of bone marrow. Finally, the Foundation pays an express courier to pick up the containers from the various centres and to deliver them to the Genoa laboratories.
This arrangement offers the greatest reassurance for all involved; doctors know that the most crucial examinations are carried out by the most highly qualified personnel in the field; parents know that everything possible is being done for their child; children can remain close to home; those who study neuroblastoma are given the best possible conditions in which to carry out their research; the Italian Neuroblastoma Foundation knows that it is performing a precious service in aid of neuroblastoma research and therapy, and that the resources made available by so many generous people are being put to good use. | | |
THE “GENUS” FRIENDLY DRUG PROJECT
Coordinator: Prof. Alessandro Quattrone. Dr. Natalia Arseni, Dr. Viktorya Sidarovich, Dr. Valentina Canella.
Prof. Quattrone and his colleagues work at the Centre for Integrative Biology (CIBIO) of the University of Trento. This project is to be carried out in collaboration with the Laboratory of the Italian Neuroblastoma Foundation in Genoa, which is co-ordinated by Dr. Gian Paolo Tonini. |
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MOLECULAR STUDY OF THE BONE-MARROW MICRO-ENVIRONMENT IN PATIENTS AFFECTED BY NEUROBLASTOMA.
Coordinator: Dr. Maria Valeria Corrias and Dr. Fabio Gallo.
Dr. Corrias and her colleagues work at the Oncology Laboratory of G. Gaslini Institute in Genoa. |
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PRECLINICAL STUDY OF THE IN VIVO ANTI-TUMOUR ACTIVITY OF A POTENTIAL ORPHAN DRUG SPECIFIC FOR THE MYCN ONCOGENE FOR NEUROBLASTOMA THERAPY
Coordinator: Prof. Andrea Pession, Dr. Roberto Tonelli, Dr. Leonardo Venturelli, Dr. Erika Cantelli and Dr. Biagio Pellicani
Prof. Pession’s group works at the Laboratory of Paediatric Oncology and Haematology of the Paediatric Clinic of the University of Bologna. |
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IMMUNOTHERAPY WITH ANTI-GD2 ANTIBODY WITHIN THE FRAMEWORK OF THE “FIRST EUROPEAN STUDY FOR HIGH-RISK NEUROBLASTOMA”
Coordinator: Dr. Roberto Luksch, Dr. Lorena Passoni and Dr. Lizia Raffaghello.
Dr. Roberto Luksch and his colleagues work at the Paediatric Department of the National Institute for the Study and Treatment of Tumours in Milan and collaborate with the Oncology Laboratory of G. Gaslini Hospital in Genoa. |
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GROWTH FACTORS AND PROTEINS AS THERAPEUTIC AGENTS
Coordinator: Prof. Giuseppe Raschellà and Dr. Fabiola Sesti
Prof. Giuseppe Raschellà and his research group work at the Biomedical Sciences section of ENEA in Rome. |
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CHARACTERISATION AND ISOLATION OF TUMOUR-DERIVED HUMAN ENDOTHELIAL CELLS IN NEUROBLASTOMA: IMPLICATIONS FOR DRUG RESISTANCE AND IMMUNOTHERAPY.
Coordinator: Dr. Annalisa Pezzolo; Co-workers: Dr. Federica Parodi
The project is being carried out at the Oncology Laboratory of the G. Gaslini Institute in Genoa. |
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MINE PROJECT
Coordinator: Dr. Luigi Varesio; Co-workers: Dr. Daniela Segalerba (laboratory technician), Dr. Paolo Fardin (biologist)
The project is being carried out at the Molecular Biology Laboratory of the G. Gaslini Institute in Genoa. |
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NEW MOLECULAR MARKERS OF PROGNOSIS IN NEUROBLASTOMA
Coordinator: Prof. Massimo Zollo; Co-workers: Dr. Alessia Galasso, Dr. Immacolata Andolfo and Dr. Anna Maria Bello.
Prof. Zollo’s group works at the Centre for Genetic Engineering (CEINGE) in Naples, inaugurated on 17th April, 2004. |
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CLINICAL-HISTOPATHOLOGICAL PROJECT
| | Scientific Coordinators of the Project | Names: Dr. Bruno De Bernardi, Dr. Alberto Garaventa
Role: Level-1 Medical Directors
Department/Facility: Department of Haematology and Oncology, G. Gaslini Institute.
| | Scientific Coordinators of the Progam | CLINICAL UNIT
Name: Dr. Alberto Garaventa
Role: Medical Director
Department/Facility: Department of Paediatric Oncology, G. Gaslini Institute
PATHOLOGY UNIT
Name: Dr. Claudio Gambini
Department/Facility: Pathology Department, G. Gaslini Institute LABORATORY FOR DIAGNOSTICS AND RESEARCH ON NEUROBLASTOMA
Name: Dr. Gian Paolo Tonini
Department/Facility: National Cancer Research Institute (IST) EPIDEMIOLOGY UNIT
Name: Dr. Riccardo Haupt
Department/Facility: Department of Biostatistics and Epidemiology MOLECULAR MARKERS UNIT
Name: Dr. Luigi Varesio
Department/Facility: Molecular Biology Unit, G. Gaslini Institute UNIT FOR GENE THERAPY OF SOLID TUMOURS
Name: Dr. Maria Valeria Corrias
Department/Facility: Oncology Laboratory, G. Gaslini Institute |
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NCOLOGICAL ROLE OF ALK AND ITS IMPORTANCE IN NEUROBLASTOMA THERAPY
Coordinators: Dr. Luca Longo, Dr. Lorena Passoni
Co-workers: Dr. Federica Del Grosso, Dr. Raffaella Defferrari, Dr. Katia Mazzocco, Dr. Marilena De Mariano, Dr. Paola Collini
Dr. Luca Longo works at the Laboratory of the Italian Neuroblastoma Foundation and at the Paediatric Translational Oncology Unit of IST in Genoa
Dr. Lorena Passoni’s group works at the Paediatric Unit of the IRCCS Foundation, National Cancer Institute, Milan.
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PILOT STUDY OF IMMUNOTHERAPY WITH THE NY-ESO-1 PEPTIDE IN PATIENTS AFFECTED BY NEUROBLASTOMA
Coordinator: Dr. Roberto Luksch.
Co-workers: Dr. Chiara Castelli, Dr. Chiara Camisaschi.
Dr. Roberto Luksch and his colleagues work at the IRCSS Foundation, National Cancer Institute, Milan; specifically, Dr. Luksch works in the Paediatric Unit, and Dr. Castelli and Dr. Camisaschi in the Human Cancer Immunotherapy Unit.
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IDENTIFICATION OF A GENETIC SIGNATURE ASSOCIATED WITH DISEASE PROGRESSION IN HIGH-RISK METASTATIC NEUROBLASTOMA
Coordinator: Dr. Paola Scaruffi
Co-workers: Dr. Sara Stigliani, Dr. Katia Mazzocco, Dr. Raffaella Defferrari, Dr. Francesca Valdora, Dr. Stefano Moretti, Dr. Stefano Bonassi, Dr. Riccardo Haupt, Dr. Alberto Garaventa, Prof. Frank Berthold.
Dr. Scaruffi and her colleagues work in the Paediatric Translational Oncology Unit of IST in Genoa and in the Foundation’s Neuroblastoma Research Laboratory. This project is to be carried out in collaboration with the Molecular Epidemiology Service of IST in Genoa, the Epidemiology and Biostatistics Unit and the Department of Haematology and Oncology of the G. Gaslini Institute in Genoa and with some European groups involved in the study of neuroblastoma.
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CAREER PROJECTS
Dr. Gabriella Pagnan
“Development of new anti-tumour drugs” Dr. Stefano Parodi
“Biostatistics and Database” Dr. Fabio Pastorino
“Preclinical study of new combined therapies based on vascular and tumour targeting” Dr. Maura Puppo
“Role of hypoxia in neuroblastoma” Dr. Barbara Banelli
“Identification of epigenetic alterations in neuroblastoma” Dr. Andrea Gregorio
“Immunohistomorphology in neuroblastoma” Dr. Michela Croce
“Preclinical study of new immunotherapy approaches to neuroblastoma” Dr. Lizzia Raffaghello
“Role of stem cells in the development of neuroblastoma and potential therapeutic implications” | | |
This project arises out of the desire to contribute to the progress of scientific research into paediatric brain tumours. Its main objective is to identify new therapies and efficacious treatments for children with brain tumours, just as the Neuroblastoma Association has done, and continues to do, with regard to neuroblastoma.
Why is research into paediatric brain tumours necessary?
Because these tumours are frequent, being second only to leukaemia in terms of incidence.
Because in many cases the therapies currently available cannot save these children's lives.
Because in many paediatric brain tumours definitive therapies cannot be undertaken. Indeed, the brain is an extremely delicate organ and surgery risks causing serious irreparable damage to healthy brain cells.
Because little is known about the genetic alterations of brain tumours in children.
Because scientific research is the only real hope we have of saving these children's lives. Brain Tumours
We normally refer to “brain tumours” in the plural. Indeed, there are many types of brain tumour, which differ in terms of growth, malignity and the area of the brain in which they develop. Childhood brain tumours are insidious; they are often discovered only after the emergence of such symptoms as morning headaches, vomiting, lethargy and impaired intellectual and motor capabilities, symptoms which develop over time and are often deceptive. Research Projects
CLINICAL RESEARCH PROJECTS:
Paediatric Neoplasms of the Central Nervous System: Histopathological Centralisation, Biological Banks and Development of Clinical Activity
Coord. Felice Giangaspero, Policlinico Umberto I, Roma BASIC RESEARCH PROJECT:
Different Pathways Involved in Paediatric Tumours of the CNS: Molecular Bases and Studies on Applications
Coord. Achille Iolascon, Centre for Genetic Engineering (CEINGE), Naples
Massimo Zollo, Centre for Genetic Engineering (CEINGE), Naples
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