The National Expert Group on Innovative Treatments for Neurological Diseases (NESPI) has been established within the National Institute for Neurological Research (NEUR-IN). Such a group is composed of leading experts who focus on advanced treatments for neurological diseases, as well as experts from related fields such as ethics, economics, legislation and representatives of patient organisations.
The work of the expert group will result not only in providing a source of information on the availability and safety of the treatment, but also in its ethical and transparent implementation.
The main objectives of the Expert Group are:
- Collection of literature on innovative treatments in both foreign and Czech media, creation and regular updating of a database of registered drugs in the Czech Republic and worldwide, prediction of the course of treatment of neurological diseases in the next five years
- Description of the current procedures and pitfalls of implementation of innovative treatment into clinical practice, proposal of setting the ideal procedure for registration of innovative treatment and its availability for patients, also based on experience from abroad.
- Defining the risks and proposing an overall position on the issue for future discussions on the ethical and economic impact of treatment, from the perspective of patients and their families, the general public, payers and legislators.
Description of the main activities of the expert group:
- searching for and monitoring the development of modern trends in the treatment of neurological diseases, such as gene therapy and gene modulation;
- acting as the main national advisory body in relation to public authorities and connecting professionals, patients, their relatives, the general public and officials involved in the whole process of implementing innovative treatments in clinical practice;
- focus on ethical, administrative and legislative aspects related to the introduction of innovative treatments into practice, their registration and reimbursement;
- Participation in education and communication with the media and the public, providing relevant and credible information to both the general and professional public and to public authorities;
- Participating in meetings and discussions with representatives of regulatory authorities, industry or the public where innovative treatment issues are involved and expertise is needed in specific areas of innovative treatment.
Current list of members of the Expert Group:,
- Doc. MUDr. Jana Haberlová, Ph.D. (Chair), Department of Child Neurology, 2nd Faculty of Medicine, Charles University in Prague and Motol University Hospital
- Prof. MUDr. Přemysl Jiruška, Ph.D. (Vice-Chairman), Institute of Physiology, 2nd Faculty of Medicine, Chairman of EpiStop z.s.
- Prof. MUDr. Tomáš Honzík, Ph.D., Department of Pediatrics and Inherited Metabolic Disorders, 1st Faculty of Medicine, Charles University in Prague,
- Ing. Lenka Hajgajda, member of the CAVO Council and chairwoman of the Gene Therapy Association,
- prof. MUDr. Pavel Kršek, Ph.D., Department of Child Neurology, 2nd Faculty of Medicine, Charles University in Prague and Motol University Hospital, Chairman of the Czech League Against Epilepsy
- cf. MUDr. Klára Brožová, Department of Paediatric Neurology, IPVZ and FTN, chairwoman of the Society of Paediatric Neurology of the Czech Academy of Sciences,
- JUDr. Lenka Teska Arnoštová, Ph.D., Society of Medical Law ČLS JEP,
- Mgr. David Kolář, Association of Innovative Pharmaceutical Industry
- Cf. MUDr. Stanislav Voháňka, CSc., Department of Neurology, Faculty of Medicine and University Hospital Brno, representative of the Czech Neurological Society,
- Prof. MUDr. Milan Brázdil, Ph.D., Department of Neurology, Faculty of Medicine, MU and FNUSA, representative of the Czech Neurological Society and the Czech League Against Epilepsy,
- Prof. Robert Jech, M.D., Ph.D., Department of Neurology, 1st Faculty of Medicine, Charles University in Prague and VFN, representative of the Czech Neurological Society,
- Prof. Robert Rusina, M.D., Ph.D., Neurological Clinic, Charles University in Hradec Králové, representative of the Czech Neurological Society,
- RNDr. Jitka Soukupová, Ph.D., IHIS, Deputy Director for Science and Grants,
- Mgr. Věra Franková, Ph.D. et Ph.D., Department of Humanities in Medicine, 1st Faculty of Medicine, Charles University
The members of the group are divided into three working groups with a focus according to the individual objectives of NESPI.
