Table 2 Comparing the features of selected HUS registries

Geographical coverage

Regional

✓

–

–

–

–

–

National

–

–

✓

✓

–

✓

International

–

✓

–

–

✓

–

Purposes

Clinical

✓

✓

✓

✓

✓

✓

Research-based

✓

✓

✓

–

✓

✓

Epidemiological-based

–

–

–

✓

✓

✓

Data set

Demographics

✓

✓

–

✓

✓

✓

Clinical history

✓

✓

–

✓

✓

✓

Paraclinical measures

✓

✓

–

✓

✓

✓

Treatment

✓

✓

–

✓

✓

✓

Outcomes

✓

✓

–

✓

✓

✓

Biological samples

–

✓

–

–

✓

–

Patient evaluation (safety/drug efficacy)

–

–

–

–

–

–

Data quality assessment strategy

Completion of data

✓

–

–

–

–

–

Physician’s participation in data quality control

–

–

–

–

–

–

Following data quality guidelines

–

–

–

–

–

✓

Using of data quality indicators

–

–

–

–

–

–

Evaluating and auditing data quality

–

–

–

✓

–

✓

Training courses on data quality

–

–

–

–

–

✓

Data errors tracking

–

–

–

✓

–

–

Real-time evaluation of data at the time of its entry

–

–

–

–

–

–

Inclusion criteria

Atypical HUS

✓

✓

✓

✓

✓

✓

Typical UHS

–

–

–

✓

–

–

Children

✓

✓

✓

✓

✓

✓

All ages

✓

✓

✓

✓

–

✓

Exclusion criteria

Atypical HUS

–

–

–

*

–

–

Typical UHS

✓

–

✓

–

–

–

Adults

–

–

–

–

✓

–

Registrars

Physicians (nephrologists)

✓

–

✓

–

✓

✓

Data collection

Retrospective

✓

✓

–

✓

–

–

Prospective

✓

✓

✓

✓

✓

–

Data sources

Healthcare centers

✓

✓

–**

✓

✓

✓

Diagnostic centers

–

–

✓

✓

–

–

Research centers

–

–

–

–

✓

✓

Geographical coverage

Regional

–

–

–

–

1

National

–

–

✓

✓

5

International

✓

✓

–

–

4

Purposes

Clinical

✓

✓

✓

✓

9

Research-based

–

✓

✓

✓

8

Epidemiological-based

✓

–

–

✓

5

Data set

Demographics

✓

✓

✓

✓

9

Clinical history

✓

✓

✓

✓

9

Paraclinical measures

✓

✓

✓

✓

9

Treatment

✓

✓

✓

✓

9

Outcomes

✓

✓

✓

✓

9

Biological samples

–

–

–

✓

4

Patient evaluation (safety/drug efficacy)

–

✓

–

–

1

Data quality assessment strategy

Completion of data

–

–

–

–

1

Physician’s participation in data quality control

–

✓

✓

–

2

Following data quality guidelines

–

–

–

–

1

Using of data quality indicators

–

–

–

✓

1

Evaluating and auditing data quality

–

–

–

–

2

Training courses on data quality

–

–

–

–

1

Data errors tracking

–

–

–

–

1

Real-time evaluation of data at the time of its entry

–

–

–

✓

1

Inclusion criteria

Atypical HUS

–

✓

✓

–

8

Typical UHS

✓

–

–

–

2

Children

✓

✓

✓

–

9

All ages

✓

✓

–

–

7

Exclusion criteria

Atypical HUS

*

–

–

–

2

Typical UHS

–

✓

–

–

3

Adults

–

–

✓

–

2

Registrars

Physicians (nephrologists)

✓

✓

✓

✓

8

Data collection

Retrospective

✓

–

✓

–

5

Prospective

–

✓

✓

✓

8

Data sources

Healthcare centers

✓

✓

✓

✓

9

Diagnostic centers

–

–

–

–

2

Research centers

–

–

–

–

2