The road to successful people-centric research in rare diseases: the web-based case study of the Immunology and Congenital Disorders of Glycosylation questionnaire (ImmunoCDGQ)

Table 2 Number of participants who did not complete the entire questionnaire in one session

Participant groups	Nº of participants not completing the questionnaire in one session	Nº of days to complete the questionnaire		Immune status
Participant groups		µ	SD	0	1	2
CDG group (Total)	42 out of 209 (20.0%)	21.8	23.5	13 (31%)	24 (57.1%)	5 (11.9%)
PMM2-CDG group	30 out of 122 (24.6%)	21.2	22.5	9 (30%)	17 (56.7%)	4 (13.3%)
Non-PMM2-CDG group	12 out of 87 (13.8%)	23.2	26.9	4 (33.3%)	7 (58.3%)	1 (8.3%)
Control group	0 out of 349 (0%)	NA

Results are presented per participant group and according to the immunological status. Percentages (%) are shown
0, without immunological involvement; 1, with Immunological involvement; 2, unsolved immune status; NA, not applicable; SD, standard deviation

ISSN: 1750-1172