Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study

Litzkendorf, Svenja; Frank, Martin; Babac, Ana; Rosenfeldt, Daniel; Schauer, Franziska; Hartz, Tobias; Graf von der Schulenburg, J.-Matthias

doi:10.1186/s12889-020-08926-9

Table 3 Participant characteristics

From: Use and importance of different information sources among patients with rare diseases and their relatives over time: a qualitative study

Patients
Age	Gender	Group of rare disease
23	female	Genetic skin disease
32	male	Cystic fibrosis and pulmonary disease
32	male	Immunodeficiency
39	male	Skeletal dysplasia
66	male	Genetic skin disease
85	female	Connective tissue disease
70	male	Connective tissue disease
72	male	Genetic kidney disease
47	male	Congenital metabolic disease
50	female	Immunodeficiency
53	female	Genetic skin disease
58	female	Genetic disease of the digestive tract
54	female	Cystic fibrosis and pulmonary disease
57	female	Immunodeficiency
44	female	Neuromuscular disease
43	female	Cystic fibrosis and pulmonary disease
47	female	Neuromuscular disease
71	male	Neuromuscular disease
44	female	Genetic skin disease
53	female	Connective tissue disease
72	male	Genetic skin disease
48	female	Immunodeficiency
54	female	Genetic skin disease
58	female	Congenital metabolic disease
72	female	Immunodeficiency
48	female	Genetic kidney disease
47	female	Congenital blood formation disease
44	female	Skeletal dysplasia
27	female	Congenital blood formation disease
36	female	Genetic kidney disease
40	female	Congenital metabolic disease
61	female	Neuromuscular disease
48	male	Congenital blood formation disease
44	female	Genetic eye disease
52	female	Genetic eye disease
46	male	Cystic fibrosis and pulmonary disease
60	male	Neuromuscular disease
62	female	Neuromuscular disease
48	female	Genetic eye disease
61	female	Connective tissue disease
66	female	Congenital metabolic disease
18	female	Congenital blood formation disease
64	female	Congenital metabolic disease
37	male	Cystic fibrosis and pulmonary disease
49	female	Congenital metabolic disease
59	male	Genetic kidney disease
70	male	Connective tissue disease
45	female	Genetic kidney disease
51	female	Genetic kidney disease
62	female	Genetic eye disease
39	female	Neuromuscular disease
51	male	Immunodeficiency
40	male	Skeletal dysplasia
74	male	Cystic fibrosis and pulmonary disease
69	female	Immunodeficiency
Relatives
Age	Gender	Group of rare disease
44	male	Neuromuscular disease
48	male	Skeletal dysplasia
28	female	Genetic skin disease
46	female	Genetic skin disease
60	female	Skeletal dysplasia
50	male	Neuromuscular disease
43	female	Skeletal dysplasia
46	male	Congenital metabolic disease
40	female	Genetic skin disease
49	female	Cystic fibrosis and pulmonary disease
45	female	Genetic skin disease
32	female	Genetic disease of the digestive tract
41	male	Skeletal dysplasia

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ISSN: 1471-2458

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