IKCC (International Kidney Cancer Coalition) launches www.10forIO.info, a new web-based resource for kidney cancer patients: trusted, evidence-based, patient-focused and understandable.
The International Kidney Cancer Coalition (IKCC) announced the launch of a new internet platform “10-for-IO” – Ten for immuno-oncology (IO) – offering comprehensive information about immuno-oncology, with a specific focus on kidney cancer. IO is an innovative therapeutic approach currently being tested in various types of cancer including metastatic renal cell carcinoma (mRCC). The prospect of immuno-oncology has raised high expectations among both the medical and the kidney cancer patient community. The new website “10-for-IO” (www.10forIO.info) aims to address many questions kidney cancer patients around the world are asking. The platform also tries to address potential misinformation and exaggerated expectations shown in the lay media and various online communities.
“While the early data for IO certainly looks very encouraging for advanced kidney cancer patients, we also need to be mindful that there is much yet to be learned”, says Professor Viktor Grunwald, MHH Hannover, Germany. “Many of these therapies are currently being studied in clinical trials worldwide. As of today, only a fraction of patients achieves long-term responses. Therefore the aim of current studies is to combine different IO treatments and explore novel targets in order to enrich the fraction of responding patients. We still have a great deal to learn about long-term efficacy, suitability of patients for IO, and combining medications. In the meantime, our patients are seeking information online. The new website “10-for-IO” is a great tool to support patients looking for clinical trials and learning more about IO for this disease.”
At the global level, the IKCC worked to coordinate efforts of patient organisations around the world: “We did so by collaborating on a truly international basis: we worked with kidney cancer patient organisations and with medical experts around the world to address common questions”, explains Dr Rachel Giles, Chair of the IKCC Board, in The Netherlands. “We began with the top 10 most frequent questions from all over the world – and set out to answer those 10 questions with medically-reviewed answers now available on this website.” The content has been written in a straightforward patient-language by medical writers and expert patients. It was reviewed by medical experts who have in-depth knowledge of both kidney cancer and immuno-oncology. The website was initially launched in English but other languages such as German, French, Spanish, and Portuguese will follow in the coming months.
Clinical trials for IO are rapidly recruiting patients around the world. The website “10-for-IO” highlights some of the major IO clinical trials being conducted globally in renal cell carcinoma. While other resources list clinical trials for clinicians, the focus was to explain these trials in patient-friendly language. The website also addresses common questions about clinical trials and provides information to help patients evaluate options. In the future, the new website will provide patient-written summaries of the results of IO clinical trials in kidney cancer.
The 10forIO website has already been recognised as an important step forward in patient engagement in an area of emerging scientific discovery. Deans of the University Medical Center Utrecht (www.umcutrecht.nl) fully support and endorse this patient-led initiative: “I think this example of patient empowerment is definitely what Science in Transition advocates. We would be proud to share this initiative through our online channels.“
