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Table 3 Logistical challenges

From: The experience of living with Niemann–Pick type C: a patient and caregiver perspective

Patient (age at diagnosis)

Logistical difficulties related to study participation

18 (7)

Caregivers unable to travel

2 (10)

No

17 (10)

Travel difficulties with medical equipment

12 (14)

No

19 (14)

No

1 (14)

No

3 (22)

No

13 (24)

No

16 (25)

No

4 (27)

No

10 (28)

No

11a (29)

Travel difficulties

6 (30)

No

15 (30)

Caregiver requested transportation and lodging to be organized

9 (30)

No

14 (36)

Caregiver requested transportation and lodging to be organized

7 (39)

No

8 (46)

Caregiver requested more financial compensation

5 (59)

No

  1. Sorted based on age of diagnosis, in ascending order
  2. aPatient deceased