The website pacjentwbadaniach.abm.gov.pl is being launched
The Poles are still very reserved about participation in clinical trials, which is heavily dependent on the lack of knowledge on the benefits and risk. More and more people are seeking information on the subject. Implementation of the "Patient in clinical research" project and creation of the website https://pacjentwbadaniach.abm.gov.pl/, where a number of materials on clinical research can be found and where we may look for trials we are interested in, is an answer to this need.
The website was created thanks to Urszula Jaworska's idea (the President of the Urszula Jaworska Foundation) and cooperation of non-governmental organisations, scientific sector, public administration and technological and pharmaceutical sector. The website is a reliable source of information on clinical research and all the procedures connected to it. Patients, doctors and non-governmental organisations working for protection of health will find a lot of detailed information on standards, procedures and requirements in the area of conducting a clinical trial, detailed information for the patients on participation in a trial, stories of patients and also answers to the frequently asked questions presented in an understandable way. The site was created for the patients, so that they could obtain reliable information on clinical research and consciously decide on participation in a trial.
A reliable and complete information on a clinical trial is essential for patients. Patients should receive it at the beginning of the diagnosis process, so that they can take conscious decisions about their treatment. Now the clinical trials are treated like compassionate use therapies, which may hamper proper assessment of benefits and risks connected to clinical research. We should change it - stresses Mariusz Błaszczyk, a representative of the Urszula Jaworska Foundation.
Patients often do not know where they should seek for information on clinical trials being conducted. The aim of the website, which is available for the users, is to facilitate access to databases informing about clinical trials which are currently being conducted. Patients may find the information on the sites that offer official clinical research data bases in various phases of implementation. In case of foreign databases the problem of the language barrier will be gone, as the instructions for used have been described in Polish. We hope that thanks to the changes provided for in the draft act on clinical research that in January was sent to the Minister of Health, it will be possible to launch the publicly available database of clinical research which will be the source of information on the currently conducted clinical trials. It will help the patient with a specific disease to find in a relatively easy way a trial that is of interest to them and that meets their needs - sums up Radosław Sierpiński, MD, PhD, acting President of the Medical Research Agency.
Each year about 30 thousand patients participate in trials, whilst in Great Britain the number is as high as about 300 thousand patients. A low percentage of participation of patients stems from the lack of knowledge on the trials being conducted and the fears connected to being a trial subject. The website https://pacjentwbadaniach.abm.gov.pl/ is supposed to support patients in case of any doubts and be an answer to any questions about clinical trials.
The patients and their families are waiting for new, more and more effective and safer therapies. Thanks to the trials a progress in medicine may be achieved and patients may be treated with innovative medicines. However, if we want the patients to participate in clinical research, they have to understand all the "pros and cons" - stresses Bogna Cichowska-Duma, Director General of the Employers' Union of Innovative Pharmaceutical Companies INFARMA.
The following public and private institutions were engaged in the project: The Ministry of Health, Medical Research Agency, Urszula Jaworska Foundation, Employers' Union of Innovative Pharmaceutical Companies INFARMA, Polish Association for Good Clinical Practice GCPpl, Employers Union of Contract Research Companies POLCRO, Polish Union of Patient Organisations "Citizens for Health", Office for Registration of Medicinal Products, Medical Devices and Biocidal Products, Polish Union of Pharmaceutical Industry Employers PZPPF and Children's Memorial Health Institute.
We hope that the website https://pacjentwbadaniach.abm.gov.pl/ will help patients navigate in the subject of clinical research and also will facilitate the access to updated knowledge in this area.