Wkład państw Grupy Wyszehradzkiej w rozwój Europejskiej Sieci Pacjentów z Rzadkimi Chorobami Układu Nerwowego

Visegrad countries rare neurological disorders network initiative

A first conference on Visegrad Countries Contribution to European Reference Network on Rare Neurological Diseases was held in Warsaw, Poland on 23^rd April 2016. Representatives of each particular Visegrad country were present as well as guests who are involved into European rare neurological disorders networking initiatives. Invited participants from Visegrad countries in alphabetic order were:

Dr. Zoltan Grosz M.D, Ph.D. specialist in neurology, from the Institute of Genomic Medicine and Rare Disorders at the Semmelweis University in Budapest, Hungary,

Dr. hab. Zsigmond Tamas Kincses M.D, Ph.D. specialist in neurology, from Department of Neurology, Head of Neuroimaging Research Group of the Szeged University in Szeged, Hungary,

Professor Maria Judit Molnar M.D., Ph.D., DSc. specialist in neurology, psychiatry and clinical genetics, director of Institute of Genomic Medicine and Rare Disorders, elected President of the Hungarian Human Genetic Society, secretary of the Hungarian Personalized Medicine Association, from Semmelweis University in Budapest, Hungary,

Dr. Matej Skorvanek M.D, Ph.D. specialist in neurology, from the Department of Neurology at the Safarik University in Kosice and University hospital of L. Pasteur, Slovakia,

Dr. Olga Ulmanova M.D, Ph.D. specialist in neurology, Department of Neurology and Centre of Clinical Neuroscience at the Charles University in Prague, Czech Republic,

Prof. Rafał Płoski Ph.D. Head of Department of Genetics of Medical University in Warsaw, Poland.

Dr. Grzegorz Witkowski M.D, Ph.D. specialist in neurology, First Department of Neurology in the Institute of psychiatry and Neurology, Warsaw, Poland.

Invited speakers from other countries were:

Prof. Adrian Danek M.D,  specialist in neurology, associate professor at Department of Neurology at the University Hospital in Munich, Germany, who is a leader within the Neuroacanthocytosis Network and our networking expert in rare neurological disorders ,

Professor G. Bernhard Landwehrmeyer M.D, Ph.D. specialist in neurology, Principal Investigator of Global Enroll-HD Study from Department of Neurology at the Ulm University, Ulm, Germany,

Dr. Gabriel Miltenberger-Miltenyi M.D., Ph.D., specialist in genetics, Institute of Molecular Medicine, the University of Lisbon, Lisbon, Portugal,

Professor Jean-Marc Burgunder M.D, Ph.D. specialist in neurology, Chair of European Huntington’s Disease Network Executive Committee based in Bern Switzerland.

Organizer of the meeting was Danuta Lis, President of the Polish Huntington’s Disease Association and host of the conference was Dr. Daniel Zielonka M.D, Ph.D. specialist in neurology, supporting member of the Polish Huntington’s Disease Association, affiliated at Department of Epidemiology of Rare Neurological Disorder and Neuroepidemiology at Poznan University of Medical Sciences, Poznan, Poland.

Several aspects of neurological rare disorders networking were discussed at the meeting. Each meeting participant introduced himself/herself at the beginning and described his/her current work and achievements in rare neurological disorders research and care/treatment experience.  This formed the basis to open a discussion concerning vision of our Study Sites potential contribution to a rare neurological disorders network. As several different visions were presented, discussion was needed to establish draft of the possible network construct. Speakers invited from outside of Visegrad countries presented expectations of European community regard such network and potential conflict of interests with other ongoing initiatives.

The discussion allowed to establish a preliminary roadmap for the Visegrad countries rare neurological disorders network and take the following decisions:

1. The rare neurological disorders network formed in Visegrad countries will be interested in rare movement disorders. These types of disorders are the main field of interest at all Study Sites represented at the meeting.
2. The main aim of the network should be to conduct research leading to established diagnosis in as yet undiagnosed disorders and to observe patients entered to the network in observational study (similar to earlier studies for Huntington disease like REGISTRY or Enroll-HD) based on IT platform dedicated for the network. Later transition into reference centers ensuring total care (treatment and rehabilitation) will be prompted.
3. Financial support for the network in developmental stage could potentially be based on Visegrad Funds grants. Later, other financial opportunities based on Visegrad countries financial options and on European funds will be researched. At the end of the day it is hoped that Study Sites will become reference centers for rare neurological movements disorders with constant financial support and will join European Reference Network on Rare Neurological Diseases.
4. All Study Sites will collaborate building common patients’ database available for all Study Sites representatives. Moreover Study Sites will conduct together research and will build biological material repository with diagnostic options. Professor Rafał Płoski is able to ensure such repository as well as next generation genome sequencing tool for patients with unconfirmed diagnoses.
5. To invite other rare neurological disorders concerning Study Sites from Visegrad countries to join the new formed network. Each participant declared that he/she will look for such Study Sites in his/her country.
6. Patients lay organizations should be important partner in the network formation and development. Model of collaboration between lay people and professionals established by EHDN is recommended.
7. To organize next Visegrad Study Sites rare neurological disorders network meeting after one year from the date of the first one to summarize our one year experiences and achievements.

Our initiative should be announced to nerve-centers in all Visegrad countries and our idea should be widespread across European countries.