The Authors present the aims, organization and the first results of the Pilot Project of the Italian Neurofibromatosis Register. The initiative, promoted in Autumn 1995 by the NF Italian Study Group, has now a participation of 27 Centers that, in only 9 months, have produced information on 548 NFI patients, 13 NF2 and 5 NF5. The Register uses the National NF Foundation International DataBase, (U.S.A.). We compare this collecting data experience at the national level to earlier initiatives and we present its advantages. In conclusion, the Register is becoming the best instrument to spread the collaboration in the scientific and take-care fields among all those who are interested in NF in Italy and in other Countries.
The pilot project of the Italian Neurofibromatosis Register
Margari L.;Romano C.;
1997-01-01
Abstract
The Authors present the aims, organization and the first results of the Pilot Project of the Italian Neurofibromatosis Register. The initiative, promoted in Autumn 1995 by the NF Italian Study Group, has now a participation of 27 Centers that, in only 9 months, have produced information on 548 NFI patients, 13 NF2 and 5 NF5. The Register uses the National NF Foundation International DataBase, (U.S.A.). We compare this collecting data experience at the national level to earlier initiatives and we present its advantages. In conclusion, the Register is becoming the best instrument to spread the collaboration in the scientific and take-care fields among all those who are interested in NF in Italy and in other Countries.I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
