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Table 1 Characteristics of U.S. based participants in an online registry of NF patients (as of October 2015)

From: Increasing access to specialty care for rare diseases: a case study using a foundation sponsored clinic network for patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis

 

All patient registry participants

Participants attending an NF network clinic

Participants not attending an NF network clinic

Total

4476

982

1289

Age

 Pediatric

1980 (44.2%)

541 (55.1%)

493 (38.2%)

 Adult

2496 (55.8%)

441 (44.9%)

796 (61.8%)

Disease Type

 NF1

3898 (87.1%)

844 (86.0%)

1093 (84.8%)

 NF2

496 (11.1%)

119 (12.1%)

162 (12.6%)

 Schwannomatosis

82 (1.8%)

19 (1.9%)

34 (2.6%)

Region

 New England

245 (5.5%)

80 (8.1%)

54 (4.2%)

 Mid East

720 (16.1%)

224 (22.8%)

165 (12.8%)

 Great Lakes

755 (16.9%)

185 (18.8%)

174 (13.5%)

 Plains

383 (8.5%)

73 (7.4%)

97 (7.5%)

 Southeast

1062 (23.7%)

241 (24.5%)

313 (24.3%)

 Southwest

402 (9%)

74 (7.5%)

174 (13.5%)

 Rocky Mountain

268 (6%)

46 (4.7%)

55 (4.3%)

 Far West

641 (14.3%)

59 (6%)

257 (19.9%)

  1. Data not broken out for subgroup of registry participants who did not indicate their location of NF care (n = 2205)