Norsk
Photo: Oslo Myelomatosesenter
Bone marrow cancer is a rare form of cancer that is also known as myeloma. It is characteristic of this form of cancer that it usually becomes resistant to treatment after a certain time, so the patients are dependent on continuous access to new forms of treatment. Thanks to Oslo Myeloma Center, Norwegian patients are able to take part in clinical trials with treatments that will not be generally available until eight or ten years from now.
“In the course of 2018, we have started up a number of clinical trials with revolutionary new treatments for this group of patients, including a CAR-T trial,” says cancer researcher and doctor Fredrik Schjesvold. He is also head of Oslo Myeloma Center.
The centre’s vision is for each individual patient diagnosed with bone marrow cancer to be a trial patient, i.e. that he or she will be able to receive the newest treatments under development.
Biggest in the Nordic countries in just a few years
Siri Kolle, who is responsible for clinical trials in Inven2, has been in close dialogue with Schjesvold for the past few years. She is impressed with what he and his colleagues have achieved in a short space of time.
“In just four years, Schjesvold has built up Oslo Myeloma Center into the Nordic countries’ biggest clinical trial centre for this rare form of cancer, which shows that it is possible to get prestigious and important clinical trials to Norway,” says Siri.
She believes there are many good reasons why the centre stands out among the global competition to conduct trials for the most advanced new treatments.
“The most important factors are that the centre provides good data on patients taking part in the trials, they get the trials promptly under way, and they also include many patients in the trials quickly. These are decisive factors to international pharmaceutical companies choosing an institution for their trials,” says Kolle.
She is clear that in an era where the number of clinical trials is on the decline in Norway, at the same time as there are political demands to increase activity in clinical trials, Schjesvold and his colleagues stand out in a very positive way.
“Oslo Myeloma Center contributes to more activity in clinical trials and, along with other communities, thereby puts Norway on the map. This can lead to more pharmaceutical companies wanting their clinical trials to be conducted in Norway, also for illnesses other than myeloma,” says Kolle.
Schjesvold on his part is highly satisfied with the cooperation with Inven2, and feels that it greatly reduces his and the other scientists’ workload.
“Inven2 does a lot of the administrative work and is also good at guiding us in the right direction by implementing procedures and guidelines to ensure professionalism in all parts of the operation,” says Schjesvold.
Communication is the secret
So why has Oslo Myeloma Center succeeded where others struggle? Back in 2014, they could not offer any active trials to patients. Today, the situation is quite the opposite. As many as 200 patients are now participating in groundbreaking trials, which the centre has succeeded in bringing to Norway despite fierce global competition.
“It has been a fun journey. We’ve initiated many measures that, as a whole, have been successful,” says Schjesvold, and continues:
“Firstly, I’ve been able to concentrate my work on the clinical trials, initially part-time, but now in a full-time position. I’ve travelled to conferences and sung the praise of the centre to pharmaceutical company representatives. Not just at one conference, but again and again. And when we have won trials on the basis of these efforts, we have delivered. We’ve worked hard and quickly included many patients. In this way, we’ve had more to boast about at the next conference and so on,” says Schjesvold.
Schjesvold has also used communication actively because it is no longer an easy task to inform either doctors or patients about open trials.
“I started sending out newsletters by mail early on to both trial centres and doctors who treat myeloma patients across Norway. In these, I write about all current and future the trials, and I enclose a list of which hospitals are included,” says Schjesvold.
He is also conscious of using media to gain the attention of both potential trial participants and their doctors. On several occasions, Schjesvold has personally contacted the Norwegian Broadcasting Corporation (NRK), Dagens Medisin and the newspaper Aftenposten and achieved major coverage of the centre and the available clinical trials.
In addition, the patients themselves have chosen to share their moving stories, which often include how they are managing to live well with their illness thanks to new medicines made available through their participation in a clinical trial.
Exciting developments
The hard work has been fruitful, but the plans for the new trials in 2018 show that the centre has perhaps barely got started?
An example is the trial reported on the cover of the Norwegian newspaper VG and with a major story in February 2018. In this story, former head of intelligence Kjell Grandhagen explains that he is the first myeloma patient in the world to test out a brand new combination of three medicines to treat bone marrow cancer.
“It’s great to be able to offer this trial that Grandhagen is participating in. In addition, we are about to embark on our first trial based on our own research. That’s a major step. We are also incredibly proud to have initiated a trial that I know the whole world wants, and that’s a CAR-T trial,” says Schjesvold.
Praise from the industry
MSD is one of the big global corporations that has had major phase III trials at Oslo Myeloma Center. Clinical Research Manager Frode Bjerkely was responsible for these trials in Norway.
“I would like to praise Fredrik for developing a centre for clinical research that is unique in a Norwegian context. Despite some teething problems initially, it is now a well-established and well-functioning centre. We see a unique competitive attitude as regards patient recruitment and a desire to be attractive to the industry. It could be compared to what we in the MSD see in Israel, a country known for entrepreneurship,” says Frode Bjerkely.
“They managed to become the centre in the world with the most patients per centre in both our trials. Our trials were unfortunately stopped in summer 2017 due to patient safety concerns, and the patients had to discontinue treatment. That sort of thing happens in the development of pharmaceuticals, but they also handled that well, and the patients are still being followed up. If we have relevant trials relating to haematologic diseases, we will definitely suggest using the centre again,” says Bjerkely.
Are you a patient, next of kin or doctor who would like to know more about trials taking place at Oslo Myeloma Center? Contact us via the centre’s website.
Facts
Oslo Myeloma Center
Oslo Myeloma Center is part of the Department of Haematology at Rikshospitalet, Oslo University Hospital. The head of the centre is haemetologist and researcher Fredrik Schjesvold. He has built up the centre from three employees in 2014 to 20 employees in 2018.
Oslo Myeloma Center is the biggest clinical centre in the Nordic countries in the field of bone marrow cancer and is the centre that recruits the most patients in the Nordic countries in all trials they participate in.
Read more on the centre’s website.
Myeloma:
Myeloma, or bone marrow cancer, is a rare and serious form of blood cancer. Around 400 Norwegians receive the diagnosis each year, and about 3,000 currently live with the disease. Treatment is characterised by the patients developing resistance to treatment after a certain time, and thereby dependent on continuous access to new forms of treatment.
Overview of clinical trials:
Oslo Myeloma Center in the media
Dagens Medisin – «Har inkludert 100 pasienter i kliniske studier»
VG – «Nytt medikament mot benmargskreft godkjent i Norge – etter nesten to år i kø»
Aftenposten – «Kreftpasient måtte google seg fram til studie som kan gi ham ekstra levetid»
VG – «Kreftsyk general tester ny behandling:– Jeg hadde begynt å se litt mørkt på det hele»
Ekko – «Nytt håp for benmargskreftpasienter»