Table 2.

Summary of main findings on design, quality management, and maintenance of included registries

Registry attribute	Frequency
Aims	N/37			%
Providing subjects for clinical studies	12			32
Evaluating/improving clinical care	9			24
Describing epidemiology	8			22
Improving the understanding of natural history	7			19
Evaluating/improving health-related outcomes	6			16
Creating collaborations or clinical networks	6			16
Describing clinical characteristics of disease	5			14
Evaluating therapies or interventions	3			8
Providing evidence for management decisions	1			3
Unclear	5			14
Recruitment method
Clinic	34			92
PAGs	6			16
Voluntarily*	6			16
Other†	1			3
	Yes		No			Unclear
	N/37	%	N/37		%	N/37	%
Informed consent	30	81	2		5	5	14
Core data set	8	22	27		73	2	5
Coding language	9	24	24		65	4	11
PROMS collection	21	57	3		8	13	35
PAG involvement	14	38	19		51	4	11
Governance description	21	57	11		30	5	14
Data security description	28	76	6		16	3	8
Quality monitoring	19	51	15		41	3	8
Maintenance description	17	46	18		49	2	5
Funding description	30	81	5		14	2	5

Abbreviations: PROMS, patient-reported outcome measures; PAG, patient advocacy groups

* e.g., through social media, websites

† e.g., mandatory by law