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Table 1 Results of the primary survey

From: Current clinical practice for thromboprophylaxis management in patients with Cushing’s syndrome across reference centers of the European Reference Network on Rare Endocrine Conditions (Endo-ERN)

Characteristics

Total number of RCs (N = 42)

Etiology of CS treated at RCa

Benign adrenal CS

39 (93%)

Malignant adrenal CS

31 (74%)

Cushing’s disease

40 (95%)

Ectopic CS

33 (79%)

Whole spectrum of CS (i.e. benign adrenal CS, malignant adrenal CS, CD and ectopic CS) treated at RC

27 (64%)

Treatment modalities for CS available at RC

Surgery + medical treatment

3 (7%)

Surgery + medical treatment + combination therapyb

2 (5%)

Surgery + medical treatment + combination therapyb + radiotherapy

36 (86%)

Combination therapyb

1 (2%)

Preoperative medical treatment routinely provided at RC, yes (%)

16 (38%)

Thromboprophylaxis routinely provided at RC, yes (%)

31 (74%)

If yes, settinga

In the inpatient setting

25/31 (81%)

In the ambulatory setting

6/31 (19%)

Presence of a thromboprophylaxis protocol for patients with CS, yes (%)

11 (26%)

Registration of bleeding complication, yes (%)

18 (43%)

Documentation of severity and outcome of bleeding, yes (%)

22 (52%)

Registration of TE events, yes (%)

24 (57%)

If yes, specific registration of

PE + DVT

7/24 (29%)

PE + DVT + AT

17/24 (71%)

  1. AT arterial thrombosis, CS Cushing’s syndrome, CD Cushing’s disease, DVT deep vein thrombosis, PE pulmonary embolism, RC reference center, TE thromboembolic
  2. aNot mutually exclusive
  3. bCombination therapy was defined as combination of surgery and ≥ 1 of the other treatment modalities