Public and patient involvement in needs assessment and social innovation: a people-centred approach to care and research for congenital disorders of glycosylation

Table 1 Participants’ sociodemographic characteristics

Characteristics	TOTAL N = 48	Think Tank 1 (n = 16)	Think Tank 2 (n = 15)	Think Tank 3 (n = 17)
Type of participants
Patient/Family Member^a	18	6	5	7
Researcher (clinical or non-clinical)	7	5	1	1
Health Care Professional	7	1	4	2
Multiple Roles^b	16	4	5	7
Country of Residence (continent)^c
Europe	31	10	10	11
North America	11	3	3	5
Other^d	6	3	2	1
Gender
Female	33	11	10	12
Male	15	5	5	5
Education
PhD	13	6	4	3
MA/MSc	13	3	2	8
Bachelor/High School	22	7	9	6
Experience CDG (Years)
<5	22	7	6	9
5–9	12	4	4	4
≥ 10	14	5	5	4
Involvement in patient organisation
Yes	24	6	7	11
No	24	10	8	6

^aIt includes 1 patient and 17 family members
^bIt includes participants with more than one role: family member and non-clinical researcher (n = 1); family member and health care professional (n = 4); clinical researcher and health care professional (n = 8); family member, clinical researcher and health care professional (n = 3)
^cIt includes the following countries: Australia, Belgium, Canada, Chile, Czech Republic, Denmark, Finland, France, Germany, Ireland, Israel, Italy, Netherlands, Slovak Republic, Spain, Sweden, Turkey, UK, USA, and United Arab Emirates
^dIt includes participants from Asia (n = 2), Australia (n = 2) and South America (n = 2)

ISSN: 1472-6963