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 3 Number of study participants who had an immune status reassignment

Participant groups	Nº of participants whose immune status was reassigned	Immune status reported by participant (Initial)			Immune status following defined criteria application (Final)
Participant groups	Nº of participants whose immune status was reassigned	0	1	2	0	1	2
CDG group (Total)	56 out of 209 (26.6%)	42 (75%)	9 (16.1%)	5 (8.9%)	9 (16.1%)	33 (58.9%)	14 (25%)
PMM2-CDG group	40 out of 122 (32.8%)	27 (67.5%)	8 (20%)	5 (12.5%)	8 (20%)	20 (50%)	12 (30%)
Non-PMM2-CDG group	16 out of 87 (18.4%)	15 (93.7%)	1 (6.3%)	0	1 (6.3%)	13 (81.2%)	2 (12.5%)
Control group	103 out of 349 (29.5%)	68 (66%)	23 (22.3%)	12 (11.7%)	25 (24.3%)	71 (68.9%)	7 (6.8%)

Number and percentages of participants whose answer to the first question about immunological involvement (highlighted in light red in Fig. 2) was different to the follow-up information provided in specific immune-related manifestations sections
0, without immunological involvement; 1, with Immunological involvement; 2, unsolved immune status

ISSN: 1750-1172