[Organization of the National Neurofibromatosis Register and areas of application].

BACKGROUND AND PURPOSE: The neurofibromatosis is a rare genetic disease with increased tumor growing ability and different special symptoms (Riccardi-criteria). The National NF Register has been organized by NF Hungary in 2011. The idea was initiated by hungarian neurofibromatosis experts.

METHODS

The register contains data about the primary care physician, the hospital and the patient. The data are recorded by retrospective method and followed in time, so the register can track progress. Furthermore, the register has valid nutrition, physical activity and psychological data, so the users are able to make comparisons with the clinical information.

RESULTS

225 persons are registerd in the system on NF Hungary and 37 patients belong to the NF National Register. The number of patients, who are members of the registry, is always increasing. From the 37 persons 22 are females (60%) and 15 males (40%), 18 adults (48%) and 19 minors (52%).

CONCLUSION

NF Register is a very useful system to do research and to draw public health and popolazione conclusions. The register enhances the morbidity details (time of manifestation, progression, prognostic factors, prognosis), thereby could improve the cooperation and the coverage of the patients. The system is open to the patients as well, so it can give them information about new scientific results, new medical treatments and currently availavable medications.