In Russia and the CIS, problems of lack of disease awareness, as well as gaps in understanding of patient pathways and local treatment regimens, have been identified.
Because of this, there is now an active initiative to collect these data from patients with classical Hodgkin lymphoma (cHL), systemic anaplastic large cell lymphoma (sALCL), and inflammatory bowel disease (IBD).
These issues were also discussed at the 8th Conference of the International Society for EBHC. Representatives of Takeda Pharmaceuticals, 3K-Research LLC Moscow, X7 Research, Statandocs, discussed how to increase disease awareness and improve patient care.
Conference participants: Maria Leer, Tatiana Goldina, Nikolai Suvorov, Ekaterina Maslak, Kanyshay Mamyrbaeva, Artem Igoshin, Kira Efimochkina, Vitaly Marchuk, Evgenia Osipova, Svetlana Tolstova, Valentina Koyavo, Dmitry Koloda, Olga Fadeeva, Irina Murashko, Andrey Bazovoy, Sergey Simeniv, Nikolai Chertishchev, Dmitry Kryuchkov, Alexander Solodovnikov.
One of the proposed solutions to the problems: using registries to demonstrate actual data from patients with Hodgkin’s lymphoma, systemic anaplastic large cell lymphoma, and IBD, and how this data can raise awareness of the disease and support improved patient outcomes in Russia and the CIS.
For example, INTENT is a unique and most comprehensive registry of IBD, covering Russia, Belarus, and Kazakhstan. This registry plans to include up to 3,000 patients with IBD (ulcerative colitis [UC] and Crohn’s disease [CD]), recording at least 2 years of medical history at the time of patient inclusion; patients will be followed for at least one year. There is also “KLIO,” the largest national multicenter disease registry in Russia, aimed at improving outcomes in adult patients with Hodgkin lymphoma and systemic (either newly diagnosed or confirmed Hodgkin lymphoma, or patients with relapsing-remitting Hodgkin lymphoma or sALCL). The registry aims to enroll 3,000 patients and record a 3-year history before inclusion.
How can these registries help in practice?
The data from the registries will help inform health care professionals and patients about the current disease situation, treatment costs, and challenges associated with diagnosing and treating disease, with the development of initiatives that will help more accurately diagnose disease and provide timely treatment. Through dissemination of results (e.g., through publications, educational seminars), it is anticipated that greater awareness of these diseases, including subpopulations, patient movements, and areas of high unmet need, will be possible in Russia and the CIS. The creation of disease registries will facilitate greater collaboration among health care providers between sites and countries in Russia and the CIS, allowing for future comparative analysis of results.
However, there are limitations in the data obtained from disease registries that must be considered. First, diagnostic criteria, treatment evaluation, and outcomes may differ. Data are generally not validated, so there may be a lack of complete data and follow-up information for all patients. In addition, there may be limitations in the use of the resulting evidence-for example, the infrastructure for healthcare technology assessment in Russia and the CIS is still evolving, and analytic data informing optimal patient movement and diagnosis may not always be available under budget constraints.
At the end of the discussion, participants agreed that pharmaceutical companies have an increasingly important role to play in raising awareness of disease situations, understanding patient care processes, and identifying unmet needs. Evidence from local clinical practice, as well as similar disease registries developed for patients with Hodgkin lymphoma, systemic anaplastic large cell lymphoma, and IBD, will help inform new decisions for providers, as well as improve disease diagnosis, access to innovative treatments,f and patient outcomes in Russia-CIS.