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Table 2 Activities and research conducted at the clinical research networks

From: Towards the international interoperability of clinical research networks for rare diseases: recommendations from the IRDiRC Task Force

Activities conducted by the networks (% response) Rating scale: 0 = no activities, 5 = major activities

0

1

2

3

4

5

Basic Research

35

29

6

12

3

15

Translational Research

12

18

9

9

15

38

Clinical Research

3

3

15

15

18

47

Diagnosis

12

21

6

3

21

38

Treatment and Care

12

15

18

6

12

38

Preventive Medicine

29

27

3

12

9

21

Training and Fellowships for Health Care Providers and Researchers

12

24

12

12

24

18

Patients and General Public Education, Information Development and Dissemination

12

12

18

15

15

29

Organisation of Scientifc Conferences and Workshops

3

10

23

16

23

26

Research conducted by the networks (% response) Rating scale: 0 = no activities, 5 = major activities

0

1

2

3

4

5

Cellular Models of Diseases

53

15

12

0

0

21

Creation and Study of Animal Models of Diseases

47

18

12

3

6

15

Development of Computational Models of Diseases

47

21

9

6

12

6

Novel Genes discovery

29

9

12

12

9

29

Clinical Trials

21

18

15

6

12

29

Cohort Studies

12

9

21

9

6

44

Natural History Studies

29

3

9

12

9

38

Clinical Outcome Assessment and Biomarker Validation

24

12

9

12

15

29

Therapeutics/Drug development

41

21

6

15

15

3

Post-marketing surveillance

56

15

6

9

6

9

Health Technology Assessment

50

21

9

9

3

9

Behavioural studies (psycho-social)

53

6

12

12

12

6

Rehabilitation studies

55

16

16

10

0

3

  1. Percentage of clinical research networks conducting various types of activities and research. The rating scale goes from score 0 (no activities) to score 5 (major activities)