TABLE 1.
Demographics and clinical characteristics of first 200 enrollees showing number of participants in each category
| All | ACC | NEN | MTC | GIST | Chord | Othera | Mut Carr | Fam Memb | |
|---|---|---|---|---|---|---|---|---|---|
| Total subjects | 200 | 36 | 47 | 9 | 33 | 19 | 36 | 12 | 8 |
| Consent withdrawn | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 0 | 3 |
| Subjects with data analyzed | 197 | 36 | 47 | 9 | 33 | 19 | 36 | 12 | 5 |
| Sex | |||||||||
| Male | 68 | 5 | 19 | 1 | 14 | 9 | 14 | 2 | 4 |
| Female | 129 | 31 | 28 | 8 | 19 | 10 | 22 | 10 | 1 |
| Age at diagnosis (yrs) | |||||||||
| <18 | 29 | 2 | 1 | 1 | 7 | 11 | 7 | N/A | N/A |
| ≥18, <40 | 54 | 11 | 4 | 6 | 14 | 4 | 15 | N/A | N/A |
| ≥40 | 97 | 23 | 42 | 2 | 12 | 4 | 14 | N/A | N/A |
| Race | |||||||||
| White | 150 | 34 | 36 | 4 | 26 | 7 | 31 | 10 | 2 |
| Black/African American | 9 | 0 | 2 | 2 | 2 | 1 | 2 | 0 | 0 |
| Asian | 9 | 0 | 0 | 1 | 2 | 3 | 2 | 0 | 1 |
| Pacific Islanderb | 1 | 0 | 0 | 0 | 1 | 0 | 0 | 0 | 0 |
| Mixed | 10 | 1 | 4 | 1 | 1 | 1 | 0 | 2 | 0 |
| Not reported | 18 | 1 | 5 | 1 | 1 | 7 | 1 | 0 | 2 |
| Enrollment type | |||||||||
| Clinic | 109 | 26 | 20 | 8 | 21 | 10 | 20 | 4 | 0 |
| Field | 88 | 10 | 27 | 1 | 12 | 9 | 16 | 8 | 5 |
| Days dx to enrl Median (range) |
1,311 (0–13,366) |
1,349 (56–8,350) |
1,391 (18–7,035) |
3,057 (481–13,129) |
2,029 (0–13,366) |
882 (22–6,302) |
376 (2–5,727) |
N/A | N/A |
| Disease status at diagnosis | |||||||||
| Localized | 103 | 24 | 15 | 4 | 22 | 15 | 23 | N/A | N/A |
| Metastatic | 73 | 12 | 32 | 5 | 10 | 3 | 11 | N/A | N/A |
| Not available | 4 | 0 | 0 | 0 | 1 | 1 | 2 | N/A | N/A |
| Disease status at enrollment | |||||||||
| NED | 36 | 5 | 8 | 2 | 7 | 7 | 7 | N/A | N/A |
| Localized | 31 | 4 | 3 | 0 | 8 | 6 | 10 | N/A | N/A |
| Metastatic | 113 | 27 | 36 | 7 | 18 | 6 | 19 | N/A | N/A |
| Clinic cohort patients: Performance score – Median, (range, N) | |||||||||
| Karnofsky (≥16yrs) | 90 (50–100, 86) | 90 (70–100, 24) | 90 (60–100, 20) | 90 (80–100, 8) | 90 (70–100, 21) | 80 (70–100, 5) | 95 (50–100, 20) | 90 (80–100, 2) | N/A |
| Lansky (<16 yrs) | 100 (90–100, 5) | 100 (100, 2) | N/A | N/A | N/A | 100 (90–100, 5) | N/A | 100 (100, 2) | N/A |
| Cancer in first-degree relative | |||||||||
| Yes | 93 | 19 | 21 | 5 | 11 | 7 | 13 | 12 | 5 |
| No | 99 | 15 | 25 | 4 | 22 | 12 | 21 | 0 | 0 |
| Not reported | 5 | 2 | 1 | 0 | 0 | 0 | 2 | 0 | 0 |
Abbreviations: ACC, adrenocortical carcinoma; Chord, chordoma; dx, diagnosis; enrl, enrollment; Fam Memb, family member; GIST, gastrointestinal stromal tumor; MTC, medullary thyroid carcinoma; Mut Carr, mutation carrier; NED, no evidence of disease; NEN, neuroendocrine neoplasm (includes neuroendocrine carcinoma); yrs, years.
aOther is the combined data for all other tumor types, not ACC, chordoma, GIST, MTC, and NET.
bIncludes Native Hawaiians and Pacific Islanders; American Indian or Alaskan Natives were not identified in the cohort.