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 4 ImmunoCDGQ social media campaigns metrics

Social media (metrics)	Pre-launch	Recruitment		Result communication (5 posts)
Social media (metrics)	10 Days = 10 CDG Immunology Facts (11 posts)	Why should CDG families participate in the ImmunoCDGQ? (21 posts)	#ProtectCDG (6 posts)	Result communication (5 posts)
Facebook
Nº of likes	112	208	61	53
Nº of shares	58	55	12	31
Nº of comments	0	6	1	4
Nº of people reached	3584	88,760	2919	2870
Nº of interactions	472	1064	349	363
Twitter
Nº of likes	54	79	26	9
Nº of retweets	37	52	18	4
Nº of comments	0	0	1	1
LinkedIn
Nº of likes	19	45	21	6
Nº of shares	0	2	0	0
Nº of comments	0	0	0	0

Listed social media campaigns are representative of the (i) pre-launch, (ii) recruitment and (iii) result communication published on Facebook (Sindrome CDG page), Twitter, and LinkedIn

ISSN: 1750-1172