Welcome to the website of the foundation of Hemato-Oncologie voor Volwassenen Nederland (HOVON – the Heamato Oncology Foundation for Adults in the Netherlands).
The activities of the foundation are focused on improving and promoting treatment methods for adult patients with malignant hematological disorders, such as leukemia and lymphoma.
Malignant hematological disorders such as leukemia, lymphoma and multiple myeloma are rare disorders. The number of people in the Netherlands confronted with any one of these diagnoses in a given year is between 2000 and 3000. It is increasingly possible to cure an ever larger number of these patients, despite the fact that, from an early stage, these hematological malignancies are often spread throughout the lymphatic system, the blood and bone marrow. The ever rising success rate has been achieved through constant intensification of treatment and the introduction of new technologies. Well-known examples are stem cell transplantation in the form of bone marrow or peripheral blood stem cells and the use of antibodies against lymphoma.
This steady improvement of treatment results has been achieved thanks to intensive cooperation between laboratories and clinical departments. The specialization of hematology is eminently suitable for such cooperation, because the malignant cells are relatively simple to obtain from patients by means of extracting blood, bone marrow or lymph node punctions. This makes continuous study of these cells possible, without excessively burdening the patients. In addition, it was discovered within hematology at an early stage that the results of treatment can be improved by inviting as many patients as possible to participate in clinical trials. Only then can new treatment methods be compared with already existing methods, to determine whether a new technique or new medicine in fact does improve the results of the treatment. In this way, patient care and research are combined to come up with new treatment methods.
Objective & policy
At 1 October 1985, six leading internist-hematologists from various university hospitals founded the 'Stichting Hemato-Oncologie voor Volwassenen Nederland (HOVON)' in Rotterdam, with the following objective:
To promote optimum treatment of adult patients with malignant hematological diseases.
The best way of achieving optimum treatment is to establish and implement clinical trials in which participate as many patients as possible. Because hemato-oncological disorders are so rare in terms of frequency, it is vital that the necessary expertise for treatment be made available to patients rapidly, and at the highest possible level, for example by establishing and managing networks of treating physicians in various hospitals.
Since the start-up of HOVON, it was soon acknowledged that the extension to other countries would be very helpful in setting up high-quality trials. Next to the Netherlands, the HOVON network was therefore extended to also include Belgium and Luxembourg. The BeNeLux, is therefore almost standardly incorporated in new trials Next to that we have close ties with other groups that like to cooperate and be part of HOVON trials was well.
Hematological intensive care centers in the Netherlands
Since the establishment of HOVON, ten centers for hematological intensive care have gradually been developed. These hospitals are able to offer the full range of treatments for malignant hematological disorders, including stem cell transplantation and the treatment of patients with acute leukemia. Alongside the eight university hospitals, other participants are the Haga hospital in The Hague and the Medical Spectrum Twente hospital in Enschede.
These centers also provide consultations for the other hospitals in the Netherlands. This means that every hospital has a fixed hematological consultant who regularly visits the hospital and with whom there is continuous interaction for consultation about and referral of patients, whenever necessary.
Carrying out trials
Carrying out trials starts with the development of a new treatment plan that is generally compared with an already existing treatment plan. When a research topic is posed, a number of people (active within the HOVON organization as working group members) will draw up a study plan. The plan will then be discussed as widely as possible within the HOVON working group at meetings that can be attended by all interested parties from whatever hospital nationally or internationally. The protocol will then be assessed by the statistical group within HOVON (the HOVON Data Center).
When the new trial is found to be feasible, various bodies will further lay out the logistics of the new trial and get the trial approved by the appropriate authorities. Because trials are often initiated by people working in the field (doctors, internists etc), it is possible to ensure that the trials and the trial protocol receive the widest possible support, and that as many internists as possible are willing to invite their patients to participate in a trial. Collaboration is often also sought with other groups in and outside of Europe. After all, by ensuring the widest possible spread, it is possible to include patients quicker in the trial, making the results available sooner.
Organization of HOVON
The structure of the HOVON foundation appears in the following organization chart:
The increasing number of trials being undertaken, and the geographical spread of participants (currently covering some eighty percent of all hospitals in the Netherlands) and the collaboration with other national groups mean overall that the organization of HOVON over the years has undergone considerable changes. Whereas in the beginning the foundation consisted almost exclusively of those individuals who set up the foundation, and were therefore members of its Board, HOVON today has a twelve member Board, from whom an Executive of four is elected. The Board has at least one representative from the hematology departments of the university hospitals, from two general hospitals and one representative from the university clinic in Louvain. The Executive Board consists of the chair, a vice chair, a secretary and a treasurer.
The General Board of HOVON has the following members:
prof. dr. J.J. Cornelissen (Erasmus MC, Rotterdam)
prof. dr. G.A. Huls (UMCG Groningen)
prof. dr. N.M.A. Blijlevens (Radboudumc, Nijmegen)
Prof. dr. A.P. Kater (AmsterdamUMC - AMC, Amsterdam)
Prof. dr. G.M.J. Bos (MUMC, Maastricht)
Dr. M. Hoogendoorn (Medisch Centrum Leeuwarden, Leeuwarden)
Prof. dr. J.H.E. Kuball (UMC Utrecht, Utrecht)
Dr. M.C.J.C. Legdeur (Medisch Spectrum Twente, Enschede)
Dr. M.D. Levin (Albert Schweitzer ziekenhuis, Dordrecht)
Dr. O Visser (Isala Ziekenhuis)
Dr. G.J. Timmers (ziekenhuis Amstelland)
Prof. dr. P. Vandenberghe (UZ leuven)
Prof. dr. J.H. Veelken (LUMC, Leiden)
Dr. M.C. Vekemans (UC Louvain, Louvain-La-Neuve, Belgium)
prof. Dr. P.C. Huijgens (IKNL, Amsterdam)
prof. Dr. P. Sonneveld (Erasmus MC, Rotterdam)
prof. Dr. B. Löwenberg (Erasmus MC, Rotterdam)
Alongside the Board, the HOVON Data Center is an essential component of the HOVON organization. At this Data Center, all trial proposals are assessed for their statistical value, and the logistics are set up. The Data Center collates all patient details from the various participating hospitals (sometimes more the 200 sites!) and processes these data in such a way that they can be simply analyzed with solely statistical methods. The center includes a number of trial managers, statisticians, data managers and ICT administrators, and is based at the Erasmus MC in Rotterdam.
There is also a HOVON Central Office that provides support with regards to finances and contracts. The HOVON Office also organizes the annual Dutch Hematology Congress.
Within the HOVON structure, there are two types of work groups:
- Trial working groups, made up of experts in the field of for example acute leukemia, lymphoma or multiple myeloma. In these work groups, discussions are held about new trials and recommended treatments. The chairs of these trial work groups are officially also members of the HOVON Board.
- Technical working groups, that consist of experts in the field of diagnosis and monitoring. Examples are the molecular biology working group, the imaging group, etc.
In-service training, congress and protocol meetings
An annual conference called the Dutch Hematology Congress (DHC) organized jointly by the HOVON and the NVvH in January. Attending the six-monthly protocol meeting is another excellent way of keeping up to date with the latest developments and studies. Also the highlights in current studies are shared. After the general information provided in the morning, the afternoon can be spend attending one or more of the sessions organized by each working group. For the local data managers, (research) nurses, trial coordinators and consultants a separate session is organized by the HOVON data center to share information, provide training and give updates on projects that are on the road map of HOVON.
Please find the latest information on the upcoming events in the news section.
Financing of HOVON
The HOVON foundation is fully financed from self-generated funds. To date, the Dutch Ministry of Public Health has not been willing to offer the HOVON a permanent source of financing. As a consequence, the HOVON had to permanently provide for its own financing needs. Generally speaking, finance is provided by the pharmaceutical industry. After all, much patient-related research concerns the development of new medicines, or the use of medicines in new treatment strategies. The pharmaceutical industry has a vested interest in good and independent patient trials. Wherever relevant, for each trial, the HOVON establishes a contract with one or more pharmaceutical companies supplying the medicines that are the subject of the trial. This form of contract means that the costs of the trial and the costs for the central organization of HOVON remain fully transparent. The goal of HOVON is to arrive at a more permanent form of financing over the coming years.
Collaboration within the pharmaceutical field
It is of much interest to HOVON to maintain its autonomy in respect of the other stakeholders in the field. The HOVON believes firmly that this autonomy is a vital principle to make it possible for trials to be carried out independently and objectively, and in that way actually make a contribution to the further enrichment and broadening of medical knowledge.
HOVON therefore operates independently of the various industrial parties performing Investigator Initiated trials. HOVON does however collaborate closely with pharmaceutical companies.
For each trial where such collaboration takes place, a trial agreement is drawn up. In this agreement, with the HOVON as sponsor, the various responsibilities and authorities are laid down. Also laid down are the cost items to be covered by the industry, arising from the trial. This includes the medication to be provided (if applicable) and the costs of executing the trial.
The vast majority of these payments are passed on to the participating sites. A small portion is reserved to cover the overhead costs of the HOVON organization.
As well as payment for specific trials, various industrial parties also issue unrestricted grants to the HOVON. HOVON uses this funding to further stimulate technical or operational features that would benefit the quick implementation and high standards in executing trials. Next to that it is also used to strengthen hematological care in the various regions.
If you are interested in (closer) collaboration with the HOVON, please contact the HOVON Central Office
HOVON, once started as an experimental cooperative venture by a number of enthusiastic internists-hematologists, has clearly grown into a national organization with a very high level of coverage. Within the Netherlands alone already 80% are participating in HOVON trials, and each hospital is in contact with a consultant affiliated to a hematological intensive care center participating in HOVON. Thanks to this flat and open organization, new developments have an excellent likelihood of being translated into new clinical trials, and the positions taken up by HOVON have a broad impact.
By increasingly involving people from laboratories, the links between laboratory studies and clinical patient care are becoming more solid. In addition, the contacts between HOVON and other national groups in Europe and beyond are of considerable importance. In this way, HOVON is hard at work ensuring the availability of the best possible treatment plan for every individual patient diagnosed with a hemato-oncological disorder.