The Danish National Registry for Biological Therapy in Inflammatory Bowel Disease

Figures & data

Figure 1 Patient flow in the database.

Notes: Patients will be included at start or switch of biological therapy. A form for basic patient information, start of biological therapy, outpatient visit where biological therapy will be administered, switch of therapy, and discontinuation of biological therapy will be available at relevant time-point in course of therapy.

Table 1 Quality indicators

Quality indicator	Indicator standard (%)	Type of indicator
1CD: Percentage of patients with luminal CD for whom the indication for biological therapy is in accordance with the national guidelines	≥80	Process
2CD: Percentage of CD patients with no prior biological therapy for whom the selected first-line biological therapy is in accordance with the national guidelines	≥80	Process
3CD: Percentage of patients with CD in maintenance therapy with a biological agent, who have a minimum of two outpatient visits per year	≥80	Process
4CD: Percentage of patients in maintenance therapy with a biological agent, diagnosed with luminal CD, never having undergone surgery for CD, who have well-controlled disease (HBI score <5 or abrPCDAI <10)	≥60	Outcome
5UC: Percentage of patients with UC for whom the indication for biological therapy is in accordance with the national guidelines	≥80	Process
6UC: Percentage of UC patients with no prior biological therapy and chronic active disease for whom the selected first-line biological therapy is in accordance with the national guidelines	≥80	Process
7IBD: Percentage of UC patients with acute severe ulcerative colitis for whom the selected first-line biological therapy is in accordance with the national guidelines	≥80	Process
8UC: Percentage of patients with UC in maintenance therapy with a biological agent, who have a minimum of two outpatient visits per year	≥80	Process
9UC: Percentage of patients with UC in maintenance therapy with a biological agent, who have well-controlled disease (SCCAI <5 or PUCAI <10)	≥60	Outcome
10IBD: Percentage of patients with UC or CD, who are in steroid free remission after at least 6 months of biological therapy	≥40	Outcome
11IBD: Percentage of children with UC or CD in maintenance therapy with a biological agent, for whom data on height and weight is recorded in minimum two outpatient visits per year	≥60	Process

Abbreviations: abrPCDAI, Abbreviated Pediatric Crohn’s Disease Activity Index; CD, Crohn’s disease; HBI, Harvey–Bradshaw Index; IBD, inflammatory bowel disease; PUCAI, Pediatric Ulcerative Colitis Index; SCCAI, Simple Clinical Colitis Activity Index; UC, ulcerative colitis.

Table 2 Codes from The Danish National Patient Registry to be included in the Danish Registry for Biological Therapy: ICD-10 diagnostic codes used to identify patients with IBD

Crohn’s disease	K50.0–50.9
Ulcerative colitis	K51.0–51.9
IBD unclassified	K51.9, K52.9
Specific drug coding:		ATC-coding used with procedures:
BOHJ18A1	Infliximab	L04AA12 or L04AB02
BOHJ18A3	Adalimumab	L04AA17 or L04AB04
BOHJ18A4	Golimumab	L04AB06
BOHJ18A5	Certolizumab pegol	L04AB05
BOHJ26	Natalizumab	L04AA23
BOHJ19H4	Vedolizumab	L04AA33
Operation codes
KJFB00	Small bowel resection
KJFB01	Laparoscopic small bowel resection
KJFB20	Ileocecal resection
KJFB21	Laparoscopic ileocecal resection
KJFB30	Right side hemicolectomy
KJFB31	Laparoscopic right side hemicolectomy
KJFB33	Other resection of small bowel or colon
KJFB34	Other laparoscopic resection of small bowel or colon
KJFB40	Resection of transverse colon
KJFB41	Laparoscopic resection of transverse colon
KJFB43	Left side hemicolectomy
KJFB44	Laparoscopic left side hemicolectomy
KJFB46	Resection of sigmoid colon
KJFB47	Laparoscopic resection sigmoid colon
KJFB50	Other resection of colon
KJFB51	Other laparoscopic resection of colon
KJFB60	Resection of sigmoid colon with colostomy
KJFB61	Laparoscopic resection of sigmoid colon colostomy and distal closure
KJFB63	Other colon resection colostomy an distal closure
KJFB64	Other laparoscopic colon resection with colostomy and distal closure
KJFB96	Other gut resection
KJFB97	Other laparoscopic gut resection
KJFH00	Colectomy and ileorectal stoma
KJFH10	Colectomy and ileostomy
KJFH11	Laparoscopic colectomy and ileostomy
KJFH20	Proctocolectomy and ileostomy
KJFH96	Other colectomy
KJGB00	Resection of rectum
KJGB01	Laparoscopic resection of rectum with colorectal or coloanal anastomosis
KJGB10	Resection of rectum with colostomy
KJGB11	Laparoscopic resection of rectum with colostomy
KJGB30	Abdominoperianal resection of rectum
KJGB31	Laparoscopic and perianal excision of rectum
MRI
UXMD	MRI of abdomen and pelvis
UXMD10	MRI of upper abdomen
UXMD15	MRI of lower abdomen, including pelvis
UXMD20	MRI of retroperitoneum
UXMD22	MRI of abdominal wall
UXMD25	MRI of gastrointestinal tract
UXMD25A	MRI of small bowel
UXMD25B	MRI of colon
CT scan
UXCD	CT scan of abdomen and pelvis
UXCD00	CT scan of abdomen
UXCD10	CT scan of upper abdomen
UXCD15	CT scan of lower abdomen, including pelvis
Endoscopy
KUJ	Endoscopy of gastrointestinal tract
KUJC	Esophageal endoscopy
KUJC02	Esophageal endoscopy
KUJC05	Esophageal endoscopy with biopsy
KUJC12	Flexible esophageal endoscopy
KUJC15	Flexible esophageal endoscopy with biopsy
KUJF32	Colonoscopy
KUJF35	Colonoscopy with biopsy
KUJF42	Sigmoideoscopy
KUJF45	Sigmoideoscopy with biopsy
KUJF12	Enteroscopy through stoma
KUJF15	Enteroscopy through stoma with biopsy
KUJF92	Capsule enteroscopy
KUJF82	Double balloon endoscopy
KUJF85	Double balloon endoscopy with biopsy
Chest X-ray
UXRC00	X-ray of chest
UXRC05	X-ray of chest
Abdominal X-ray
UXRD	Abdominal X-ray
UXRD15	Small bowel follow-through
UXRD20	Small bowel follow-through with contrast in tube
UXRD35	Pouchografi
UXZ16	Fistulography

Notes: Treatment codes used to identify eligible patients with IBD. Codes used for surgery, radiology, and endoscopic procedures.

Abbreviations: ATC, anatomical therapeutical chemical classification; CT, computed tomography; IBD, inflammatory bowel disease; ICD, The International Classification of Diseases; MRI, magnetic resonance imaging.