Population-based Aarhus Sarcoma Registry: validity, completeness of registration, and incidence of bone and soft tissue sarcomas in western Denmark

Figures & data

Figure 1 Flow chart for patients registered in the ASR and DCR in the period 1979–2008, with number of patients (N), reasons for exclusion, and distribution across registries. Includes patients only registered in the ASR (ASR/DCR), patients only registered in the DCR (DCR/ASR), and patients registered in both registries (ASR∩DCR).

Notes: *Based on the WHO ICD-03 codes. Non-sarcoma pathology includes benign, borderline and some malignant tumors (Appendix A). This population is not complete.
Abbreviations: ASR, Aarhus Sarcoma Registry; DCR, Danish Cancer Registry; WHO, World Health Organization.

Table 1 Completeness and correctness of data by selected variables in the Aarhus Sarcoma Registry

Variables	Completeness of data % (95% CI),n		Correct data % (95% CI), n
	Prevalidation	Postvalidation	Prevalidation
Date of admission	81.8 (79.7–83.8)	100.0 (99.8–100.0)	43.2 (40.4–46.1)
	1180/1442	1827/1827	510/1180
Duration of symptoms	88.1 (86.3–89.7)	95.9 (94.9–96.8)	50.2 (47.4–53.0)
	1270/1442	1752/1827	638/1270
Cause of referral	81.1 (78.9–83.1)	100.0 (99.8–100.0)	93.7 (92.1–95.0)
	1169/1442	1827/1827	1095/1169
Tumor size	79.1 (76.9–81.2)	95.5 (94.4–96.4)	42.7 (39.8–45.6)
	1141/1442	1744/1827	487/1141
Anatomic localization
Bone sarcoma	77.6 (72.3–81.7)	100.0 (99.3–100.0)	94.1 (90.7–96.5)
	287/370	552/552	270/287
Soft tissue sarcoma	81.8 (79.4–84.1)	100.0 (99.7–100.0)	86.1 (83.6–88.3)
	877/1072	1275/1275	755/877
Compartmental localization	79.3 (77.1–81.3)	100.0 (99.8–100.0)	73.0 (70.3–75.5)
	1143/1442	1827/1827	834/1143
Histological subtype
Bone sarcoma	77.8 (73.3–82.0)	100.0 (99.3–100.0)	64.2 (58.4–69.8)
	288/370	552/552	185/288
Soft tissue sarcoma	81.0 (78.5–83.3)	100.0 (99.7–100.0)	79.4 (76.5–82.0)
	868/1072	1275/1275	689/868
Grade of malignancy	95.6 (94.4–96.6)	100.0 (99.8–100.0)	53.4 (50.7–56.1)
	1378/1442	1827/1827	736/1378
Surgery^a
Date	68.1 (65.5–70.6)	100.0 (99.8–100.0)	25.3 (22.4–28.2)
	895/1315	1564/1564	226/895
Type	80.7 (78.4–82.8)	100.0 (99.8–100.0)	97.7 (96.7–98.5)
	1061/1315	1564/1564	1037/1061
Margin	79.9 (77.7–82.1)	99.9 (99.6–100.0)	76.0 (73.3–78.6)
	1051/1315	1563/1564	799/1051
Radiotherapy^b	95.6 (94.4–96.6)	100.0 (99.8–100.0)	90.5 (88.8–92.0)
	1379/1442	1827/1827	1248/1379
Chemotherapy^b	95.6 (94.4–96.6)	100.0 (99.8–100.0)	95.9 (94.8–96.9)
	1379/1442	1827/1827	1323/1379

Notes:

a Subgroup includes only patients treated with surgery (prevalidation, n = 1315; postvalidation, n = 1564);

b data on whether or not the patient was treated with radiotherapy and chemotherapy.

Abbreviation: CI, confidence interval.

Table 2 Completeness of patient registration in the Aarhus Sarcoma Registry by gender, age, region, and time period

	%	(95% CI)	n	P^a
Gender
Male	84.5	(82.1–86.7)	829/981
Female	86.3	(83.6–88.7)	629/729	0.31
Age (years)
<20	90.2	(85.3–93.9)	184/204
20–39	90.5	(86.5–93.6)	266/294
40–59	89.6	(86.4–92.3)	396/442
≥60	79.5	(76.5–82.3)	612/770	<0.0001
Regions
South	76.9	(73.2–80.4)	423/550
Central	94.2	(92.2–95.8)	634/673
North	82.3	(78.7–85.6)	401/487	<0.0001
Time periods
1979–1983	68.0	(61.5–73.9)	157/231
1984–1988	76.8	(70.9–81.9)	185/241
1989–1993	77.4	(71.9–82.3)	206/266
1994–1998	89.8	(85.7–93.1)	255/284
1999–2003	95.9	(93.1–97.8)	305/318
2004–2008	94.6	(91.8–96.7)	350/370	<0.0001
Total	85.3	(83.5–86.9)	1458/1710

Note:

a P values based on the Chi-square test.

Abbreviation: CI, confidence interval.

Figure 2 Crude IR per 100,000 inhabitants and World Health Organization age-standardized IRR, with 95% CI and P values, for bone and soft tissue sarcoma in the Aarhus Sarcoma Registry from 1979 to 2008 according to age (years) and gender (n = 1827).

Abbreviations: CI, confidence intervals; IR, incidence rate; IRR, incidence rate ratios.

Figure 3 World Health Organization age-standardized IR per 100,000 inhabitants and IRR, with 95% CI and P values for overall, bone, and soft tissue sarcoma in the Aarhus Sarcoma Registry from 1979 to 2008 (n = 1827).

Abbreviations: CI, confidence intervals; IR, incidence rate; IRR, incidence rate ratios.

Table 3 Age-specific and gender-specific incidence rates per 100,000 inhabitants per year by time period

Age, years	Incidence rate (95% CI)
	1979–1983	1984–1988	1989–1993	1994–1998	1999–2003	2004–2008
Male
<20	1.3 (0.8–2.0)	1.5 (0.9–2.2)	0.8 (0.4–1.4)	2.0 (1.3–2.8)	1.9 (1.2–2.7)	1.7 (1.1–2.4)
20–39	2.0 (1.4–2.7)	1.7 (1.2–2.4)	1.5 (1.0–12.2)	2.4 (1.8–3.3)	2.2 (1.6–3.1)	2.1 (1.5–3.0)
40–59	1.6 (1.0–2.5)	1.9 (1.3–2.8)	2.0 (1.4–2.9)	2.6 (1.9–3.5)	3.2 (2.4–4.1)	4.7 (3.7–5.8)
≥60	4.3 (3.1–5.8)	5.3 (4.0–6.9)	4.8 (3.6–6.4)	6.0 (4.6–7.7)	7.3 (5.8–9.1)	9.2 (7.6–11.1)
Total	2.1 (1.7–2.5)	2.3 (2.0–2.8)	2.1 (1.7–2.5)	3.0 (2.6–3.5)	3.3 (2.9–3.8)	4.1 (3.6–4.7)
Female
<20	1.1 (0.6–1.7)	1.0 (0.6–1.7)	0.9 (0.4–1.5)	0.6 (0.3–1.2)	1.3 (0.7–2.0)	1.3 (0.8–2.0)
20–39	0.6 (0.3–1.2)	0.9 (0.5–1.5)	1.3 (0.8–1.9)	1.9 (1.3–2.7)	1.8 (1.2–2.5)	2.2 (1.6–3.1)
40–59	2.0 (1.3–2.9)	1.9 (1.3–2.8)	2.6 (1.9–3.6)	2.4 (1.7–3.3)	3.2 (2.4–4.1)	3.4 (2.6–4.4)
≥60	2.9 (2.0–3.9)	2.9 (2.1–4.0)	3.6 (2.7–4.8)	3.7 (2.8–4.9)	4.9 (3.8–6.3)	5.5 (4.4–6.9)
Total	1.5 (1.2–1.9)	1.6 (1.3–2.0)	2.1 (1.7–2.4)	2.2 (1.8–2.6)	2.7 (2.3–3.2)	3.1 (2.7–3.6)
Overall	1.8 (1.6–2.1)	2.0 (1.7–2.3)	2.1 (1.8–2.3)	2.6 (2.3–2.9)	3.0 (2.7–3.3)	3.6 (3.3–4.0)

Abbreviation: CI, confidence interval.

Appendix A Histology subtypes, based on ICD-O-3 World Health Organization codes, excluded from both the Aarhus Sarcoma Registry and the Danish Cancer Registry in this study

Code	Text
80003	Neoplasm, malignant
80009	Neoplasm, malignant, uncertain whether primary or metastasis
80013	Tumor cells, malignant
80019	Tumor cells, uncertain whether primary or metastasis
80043	Malignant tumor, spindle cell type
80103	Carcinoma, NOS
80109	Carcinoma, uncertain whether primary or metastasis
80123	Large cell carcinoma, NOS
80203	Carcinoma, undifferentiated type, NOS
80223	Pleomorphic carcinoma
80413	Small cell carcinoma, NOS
80703	Squamous cell carcinoma, NOS
81403	Adenocarcinoma, NOS
81409	Adenocarcinoma, uncertain whether primary or metastasis
82403	Carcinoid tumor, NOS
82409	Carcinoid, malignant, uncertain whether primary or metastasis
82463	Neuroendocrine carcinoma
84413	Serous cystadenocarcinoma, NOS
84419	Serous cystadenocarcinoma, uncertain whether primary or metastasis
84613	Serous surface papillary carcinoma
84803	Mucinous adenocarcinoma
84813	Mucin-producing adenocarcinoma
84819	Mucin producing adenocarcinoma, uncertain whether primary or metastasis
86803	Paraganglioma, malignant
87203	Malignant melanoma, NOS
88013	Spindle cell tumor
88211	Aggressive fibromatosis, extra-abdominal desmoid tumor
88301	Atypical fibrous histiocytoma, atypical fibroxanthoma
88400	Myxoma, NOS
88500	Lipoma, NOS
89353	Stromal tumor, NOS
89363	Gastrointestinal stromal sarcoma
89513	Mesodermal mixed tumor
89803	Carcinosarcoma, NOS
90203	Phyllodes tumor, malignant
90503	Mesothelioma, malignant
90513	Fibrous mesothelioma, malignant
90523	Epithelioid mesothelioma, malignant
90533	Biphasic mesothelioma, malignant
90613	Seminoma, NOS
90619	Seminoma, uncertain whether primary or metastasis
90643	Germinoma
90649	Germinoma, uncertain whether primary or metastasis
90703	Embryonal carcinoma, NOS
90709	Embryonal carcinoma, uncertain whether primary or metastasis
90713	Yolk sac tumor
90719	Yolk sac tumor, uncertain whether primary or metastasis
90803	Teratoma, malignant, NOS
90813	Teratocarcinoma
90853	Mixed germ cell tumor
91003	Choriocarcinoma
91013	Choriocarcinoma combined with other germ cell elements
91200	Hemangioma
91403	Kaposi’s sarcoma
91800	Osteoma, NOS
91910	Osteoid osteoma, NOS
92100	Osteochondroma, cartilaginous exostosis
92200	Chondroma, NOS; enchondroma
92501	Giant cell tumor of bone, NOS
92510	Diffuse-type giant cell tumor
92511	Giant cell tumor of soft parts, NOS
93103	Ameloblastoma, malignant
93643	Peripheral neuroectodermal tumor
94903	Ganglioneuroblastoma
95033	Neuroepithelioma, NOS
95600	Neurilemmoma
95803	Granular cell tumor, malignant
95903	Malignant lymphoma, NOS
95913	Malignant lymphoma, non-Hodgkin, NOS
95919	Malignant lymphoma, non-Hodgkin, NOS, uncertain whether primary or metastasis
96503	Hodgkin lymphoma, NOS
96633	Hodgkin lymphoma, nodular sclerosis, NOS
96703	Malignant lymphoma, small B lymphocytic, NOS
96713	Malignant lymphoma, lymphoplasmacytic
96733	Mantle cell lymphoma
96753	Malignant lymphoma, mix small + large, diffuse (obsolete)
96803	Malignant lymphoma, large B-cell, diffuse, NOS
96843	Malignant lymphoma, large B-cell, diffuse, immunoblastic, NOS
96873	Burkitt lymphoma, NOS
96903	Follicular lymphoma, NOS
97023	Mature T-cell lymphoma, NOS
97313	Plasmacytoma, NOS
97323	Myelomatosis
97343	Plasmacytoma, extramedullary
97403	Mast cell sarcoma
97503	Malignant histiocytosis
97563	Langerhans cell sarcoma
97583	Follicular dendritic cell sarcoma
99303	Myeloid sarcoma
99903	No microscopy, clinical malignant tumor (cancer)
99909	No microscopy, uncertain whether primary or metastasis
99993	NA morphology, malignant
99999	NA morphology, uncertain whether primary or metastasis
	Aneurysmal bone cyst
	Eosinophilic granuloma
	Neoplasm with perivascular epithelioid cell differentiation
	Nodular fasciitis
	Nonossifying fibroma
	Simple bone cyst
	Small cell anaplastic sarcoma in patients > 30 years

Abbreviations: NOS, not otherwise specified; NA, not available.

Appendix B Topography in the Aarhus Sarcoma Registry and the Danish Cancer Registry excluded from the study

Adrenal gland

Cauda equina

Cerebrum

Cordis

Pouch of Douglas

Iliac fossa

Gaster

External genitalia

Thyroid gland

Head and neck

Hepatic

Intra-abdominal

Kidney

Lung

Mediastinum

Spinal medulla

Iliopsoas muscle

Omentum majus

Pelvis minor

Pericardium

Pleura

Prostate

Retroperitoneum

Sigmoid mesentery

Small intestine

Small intestine mesentery

Spleen

Ureter

Urethra

Uterus

Vena cava inferior

Vesica urinaria