Table 3.

Patients’ and health care professionals’ suggestions for understudied groups.

Themes	Patients		Health care professionals		Total
	No.	Example suggestions	No.	Example suggestions
Patients with calcinosis	2	Patients with calcinosis	4	Patients with calcinosis	6
Minority patients	1	Minorities and disadvantaged groups	4	Black patients; Asian patients; Latino patients; patients from Maghreb countries	5
Young patients	4	Young patients; young children; children with morphea	1	Adult patients who were diagnosed as children	5
Patients with gastrointestinal involvement	1	Scleroderma patients with bowel problems	3	Patients with gastrointestinal diseases; patients with fecal incontinence	4
Patients with limited systemic sclerosis	3	Patients with limited scleroderma	1	Patients with mild, limited systemic sclerosis but after years of mild disease, develop pulmonary arterial hypertension	4
Male patients	1	Male patients with excellent health	2	Men with scleroderma	3
End-of-life patients	1	End of life/late stage (palliative care and assisted dying)	2	End of life/late stage	3
Senior patients	1	Senior patients	1	Senior patients	2
Patients with limited access to health care	2	Rural patients who are far from health services; patients with limited access to health care (especially physiotherapists)	0	–	2
Others	2	CREST (calcinosis, Raynaud phenomenon, esophageal dysmotility, sclerodactyly, and telangiectasia) patients; patients with comorbid disorders (e.g. vasculitis and Sjogren’s syndrome)	4	Patients with myopathy resulting in weakness and muscular atrophy; newly diagnosed patients; patients with long-standing disease (10+ years)	6