Analysis of the genotypic profile and its relationship with the clinical manifestations in people with cystic fibrosis: study from a rare disease registry

Table 1 Information sources that contribute CF patients to the SIER*

Pre-existing records
Regional Registry of the Minimum Basic Data Set (MBDS)
Database of People with Dependency in the Region of Murcia
Orphan drug dispensing registry of the Pharmaceutical Management Service^a
Foreign drug dispensing registry^b
Record of referral of patients to other Autonomous Communities
Clinical units
Center for Biochemistry and Clinical Genetics (CBGC)
HCUVA^c Medical Genetics Unit
Cystic Fibrosis Unit of de HCUVA^c

*Each patient can be incorporated by more than one different source of information
^aThe orphan drug dispensing registry incorporated patients who had been dispensed with Cayston® and Kalydeco®
^bThe foreign drug dispensing registry incorporated patients who had been dispensed with Kemicetine® and Orkambi®
^cHCUVA: Virgen de la Arrixaca Universitary Clinic Hospital

ISSN: 1750-1172