title: Adult congenital heart disease registry at Cairo University: a report of the first 100 patients.
abstract: OBJECTIVE
  To establish a clinical registry for adult patients with congenital heart disease (CHD) managed in Cairo University Hospitals, aiming at description of the pattern and clinical profile of such patients.
  
  
  METHODS
  Patients were recruited from both Cardiovascular Medicine Department Outpatient Clinic and inpatient wards of Cairo University Hospitals. Clinical data were collected from hospital records and directly from patients by treating cardiologists. Collected data were then registered in a dedicated database system and subsequently analyzed.
  
  
  RESULTS
  Patients (49% males) ranged in age from 16 to 63 years, with a median of 25 years. Fifty-one patients were in the age-group from 20 to 30 years, with only 9% aged 50 years or older. Seventy-eight patients had acyanotic lesions, with atrial septal defect being the most common primary diagnosis (20% of total lesions). The remaining 22 patients had cyanotic heart disease, with tetralogy of Fallot being the predominant diagnosis (45% of cyanotic lesions). Six patients presented with infective endocarditis in the setting of CHD. Four women (8% of females) presented during pregnancy. Forty-six patients were sent for surgical correction/repair, while percutaneous intervention was planned in 20 patients.
  
  
  CONCLUSIONS
  A new registry of adult patients with CHD managed in Cairo University Hospitals provides useful information, including the extent to which congenital heart defects are underdiagnosed and undertreated during infancy and childhood. In addition, those who were previously treated early in life require long-term follow-up in specialized centers. Establishment of a multidisciplinary team with expert physicians (cardiologists, dentists, obstetricians, and psychiatrists), cardiac surgeons, and nurses may be facilitated by development of a dedicated database system. Continuous financial support is a major challenge.
authors.affiliation: Department of Cardiovascular Medicine, Cairo University Hospitals, Giza, Egypt hfsaleh1@yahoo.com.
authors.forename: Heba
authors.initials: H
authors.lastname: Farouk
authors.affiliation: Department of Cardiovascular Medicine, Cairo University Hospitals, Giza, Egypt.
authors.forename: Amir
authors.initials: A
authors.lastname: Shaker
authors.affiliation: Department of Cardiovascular Medicine, Cairo University Hospitals, Giza, Egypt.
authors.forename: Amr
authors.initials: A
authors.lastname: El-Faramawy
authors.affiliation: Department of Cardiovascular Medicine, Cairo University Hospitals, Giza, Egypt.
authors.forename: Ahmed
authors.initials: A
authors.lastname: Mahrous
authors.affiliation: Department of Cardiovascular Medicine, Cairo University Hospitals, Giza, Egypt.
authors.forename: Yasser
authors.initials: Y
authors.lastname: Baghdady
authors.affiliation: Department of Cardiovascular Medicine, Cairo University Hospitals, Giza, Egypt.
authors.forename: Ahmed
authors.initials: A
authors.lastname: Adel
authors.affiliation: Department of Cardiovascular Medicine, Cairo University Hospitals, Giza, Egypt.
authors.forename: Haytham
authors.initials: H
authors.lastname: Soliman
authors.affiliation: Department of Cardiovascular Medicine, Cairo University Hospitals, Giza, Egypt.
authors.forename: Mohamed
authors.initials: M
authors.lastname: Abdel-Meguid
authors.affiliation: Department of Cardiovascular Medicine, Cairo University Hospitals, Giza, Egypt.
authors.forename: Abd-Allah
authors.initials: AA
authors.lastname: Elasry
authors.affiliation: Department of Cardiovascular Medicine, Cairo University Hospitals, Giza, Egypt.
authors.forename: Khalid
authors.initials: K
authors.lastname: Sorour
mesh_terms: D000293:Adolescent; D000328:Adult; D004534:Egypt; D005260:Female; D006330:Heart Defects, Congenital / Q000175:diagnosis / Q000601:surgery; D006785:Hospitals, University; D006801:Humans; D008297:Male; D008875:Middle Aged; D011247:Pregnancy; D011249:Pregnancy Complications, Cardiovascular / Q000175:diagnosis / Q000601:surgery; D012042:Registries; D055815:Young Adult
keywords: Cairo University Hospitals; Egypt; adult congenital heart disease; challenges; clinical registry