Year of publication
|
1990–1994
|
1 (2)
|
1995–1999
|
2 (3)
|
2000–2004
|
3 (5)
|
2005–2009
|
7 (12)
|
2010–2014
|
39 (65)
|
2015-present (June 21, 2017)
|
8 (13)
|
Country (corresponding author address)
|
United States
|
27 (45)
|
United Kingdom
|
5 (8)
|
Canada
|
8 (13)
|
France
|
4 (7)
|
The Netherlands
|
6 (10)
|
Germany
|
3 (5)
|
Italy
|
4 (7)
|
Belgium
|
1 (2)
|
Ireland
|
1 (2)
|
Australia
|
1 (2)
|
Sponsorship
|
Industry affiliations
|
16 (27)
|
None (no conflicts of interest declared)
|
24 (40)
|
Other (e.g., government funding)
|
6 (10)
|
Not explicitly reported
|
14 (23)
|
Disease/disease group of focus
|
Rare diseases in general
|
33 (55)
|
Disease groups:
|
Inherited metabolic diseasesa
|
2 (3)
|
Lysosomal storage disorders
|
3 (5)
|
Pediatric rheumatic diseases
|
1 (2)
|
Rare lung diseases
|
2 (3)
|
Rare neonatal diseases
|
1 (2)
|
Rare neurodegenerative diseases
|
1 (2)
|
Rare renal diseases
|
1 (2)
|
Individual disease(s):
|
Alpha1-antitrypsin deficiency & pulmonary alveolar proteinosis
|
1 (2)
|
Batten Disease
|
1 (2)
|
Childhood polyarteritis nodosa
|
2 (3)
|
Duchenne muscular dystrophy
|
1 (2)
|
Familial hypercholesterolemia
|
1 (2)
|
Familial Mediterranean fever
|
1 (2)
|
Gaucher disease
|
1 (2)
|
Hemophilia A
|
1 (2)
|
Late-onset Pompe disease
|
1 (2)
|
Non-dystrophic mytonia
|
1 (2)
|
Pediatric multiple sclerosis & Creutzfeldt-Jakob disease
|
1 (2)
|
Primary sclerosing cholangitis
|
1 (2)
|
Scleroderma
|
2 (3)
|
Vasculitis (rare form)
|
1 (2)
|
Types of studies
|
Review article of multiple research methods
|
28 (47)
|
Review article of a single research method
|
11 (18)
|
Application/case example of research method
|
17 (28)
|
Key article that operationalized steps for the research method
|
3 (5)
|
Other
|
1 (2)
|
Research paradigm discusseda
|
Explanatory evidence generation
|
35 (58)
|
Comparative effectiveness/pragmatic evidence generation
|
30 (50)
|
Patient-oriented evidence generation
|
15 (25)
|