Table 2 Time in days from first visit to diagnosis or final observation according to diagnosis status.

From: (Un)standardized testing: the diagnostic odyssey of children with rare genetic disorders in Alberta, Canada

Days elapseda

Mean (SE)

Median

95% CI

All individuals (n = 299)

  First visit to any health-care provider to final observation

898 (54)

595

791

1004

  Patients with a diagnosis (n = 90)

938 (92)

719

754

1121

  Patients with no diagnosis (n = 181)

806 (69)

497

670

942

  Patients with uncertain diagnosis (n = 28)

1360 (199)

1199

951

1769

  First visit to ACH GC to diagnosis or final observation

483 (32)

285

421

546

  Patients with a diagnosis (n = 90)

586 (57)

452

472

700

  Patients without a diagnosis (n = 181)

388 (39)

176

310

465

  Patients with uncertain diagnosis (n = 28)

769 (104)

563

555

983

Individuals with visits prior to ACH GC recorded (n = 200)

  First visit to any health-care provider to first visit to ACH GC

619 (64)

293

492

745

  Patients with a diagnosis (n = 61)

519 (109)

154

300

738

  Patients without a diagnosis (n = 118)

640 (85)

315

472

809

  Patients with uncertain diagnosis (n = 21)

788 (208)

546

354

1222

  First visit to ACH GC to diagnosis or final observation

486 (40)

296

408

563

  Patients with a diagnosis (n = 61)

619 (71)

562

478

761

  Patients without a diagnosis (n = 118)

383 (51)

157

283

483

  Patients with uncertain diagnosis (n = 21)

672 (115)

504

432

912

  1. ACH GC Alberta Children’s Hospital Genetics Clinic, CI confidence interval.
  2. aRounded to nearest whole day.