Table 1.

Summary results of the survey.

Center responses	N (%)
Total centers responding	72 (17.0)
Data registration
Use own registry outside of EBMT	65 (90.3)
Use of NIH criteria	68 (94.4)
Routinely use NIH criteria for diagnosis and severity grading outside of clinical trials^a
NIH2005	13 (19.1)
NIH2014	6 (8.8)
Both	49 (72.1)
Using NIH response criteria outside clinical trials	37 (51.4)
Use of Biomarkers
Confirming skin, ocular and oral mucosa cGvHD by histopathology:
Rarely (<10%)	26 (36.1)
Sometimes (10–39%)	16 (22.2)
Often (40–74%)	17 (23.6)
Routinely (>75%)	7 (9.7)
Use of specific biomarkers	5 (6.9)
Collecting and storing patient samples^a	22 (30.6)
At calendar-driven time points	15
At the onset of cGvHD	10
During the treatment of cGvHD	7
Before transplantation	3
Use of PROs	22 (30.6)
Setting of use of PROs^a:
As integral part of the clinical evaluation	20
As part of the outcome analysis	13
As monitoring of response to treatment	13
For referral to specialists	9
Most common reasons for not using PROs^a:
Resource constraints	36
Time constraints	33
Not available in the required language	14
Not familiar with interpretation of PRO data	7
Additional burden for the patients	5
Types of questionnaires used^a
Standardized	18
Questionnaires developed for specific clinic or research purposes	11
Types of standardized questionnaires used^a:
FACT-BMT	6
Lee chronic GvHD symptom scale	6
NIH Form B	5
SF-36	4
EORTC QLQ-C30	3
EQ5D	3
Other	10
Use of cell-based cGvHD therapies^a	39 (54.2)
MSCs	27
ECP closed system	24
ECP open system	19
Tregs	5

PRO patient reported outcomes, MSC mesenchymal stromal cells, ECP extracorporeal photopheresis, Tregs regulatory T cells.

^aDenotes that several answers were possible.