Table 2 Socio-demographic and career profile of the respondents

Country

Austria

10 (2.4)

Belgium

24 (5.7)

Bulgaria

4 (0.9)

Croatia

6 (1.4)

Czech Republic

9 (2.1)

Denmark

18 (4.3)

Estonia

8 (1.9)

Finland

6 (1.4)

France

28 (6.6)

Germany

38 (9)

Greece

8 (1.9)

Hungary

9 (2.1)

Ireland

3 (0.7)

Italy

96 (22.7)

Latvia

5 (1.2)

Lithuania

10 (2.4)

Luxembourg

1 (0.2)

Malta

2 (0.5)

Netherlands

38 (9)

Poland

13 (3.1)

Portugal

15 (3.5)

Republic of Cyprus

2 (0.5)

Romania

9 (2.1)

Slovakia

2 (0.5)

Slovenia

6 (1.4)

Spain

32 (7.6)

Sweden

13 (3.1)

Other

8 (1.9)

Affiliated ERN (multiple responses allowed)

Endo-ERN – European Reference Network on endocrine conditions

72

ERKNet – European Reference Network on kidney diseases

129

ERN BOND – European Reference Network on bone disorders

12

ERN CRANIO – European Reference Network on craniofacial anomalies and ear, nose and throat disorders

12

ERN EpiCARE – European Reference Network on epilepsies

18

ERN EURACAN – European Reference Network on adult cancers (solid tumours)

21

ERN EURO-NMD – European Reference Network on neuromuscular diseases

6

ERN EuroBloodNet – European Reference Network on haematological diseases

19

ERN eUROGEN – European Reference Network on urogenital diseases and conditions

17

ERN EYE – European Reference Network on eye diseases

11

ERN GENTURIS – European Reference Network on genetic tumour risk syndromes

14

ERN GUARD-HEART – European Reference Network on diseases of the heart

10

ERN ITHACA – European Reference Network on congenital malformations and rare intellectual disability

22

ERN LUNG – European Reference Network on respiratory diseases

28

ERN PaedCan – European Reference Network on paediatric cancer (haemato-oncology)

13

ERN RARE-LIVER – European Reference Network on hepatological diseases

23

ERN ReCONNET – European Reference Network on connective tissue and musculoskeletal diseases

4

ERN RITA – European Reference Network on immunodeficiency, autoinflammatory and autoimmune diseases

10

ERN Skin – European Reference Network on skin disorders

12

ERN TRANSPLANT-CHILD – European Reference Network on Transplantation in Children

19

ERN-RND – European Reference Network on neurological diseases

12

ERNICA – European Reference Network on inherited and congenital anomalies

24

MetabERN – European Reference Network on hereditary metabolic disorders

26

VASCERN – European Reference Network on Rare Multisystemic Vascular Diseases

8

Medical specialty (multiple responses allowed)

Accident and emergency medicine

1

Allergology

4

Anaesthetics

–

Biological hematology

2

Cardiology

18

Child psychiatry

1

Clinical biology

2

Clinical chemistry

–

Clinical neurophysiology

3

Clinical radiology

1

Dental, oral and maxillo-facial surgery

–

Dermatology

7

Dermato-venerology

9

Endocrinology

57

Gastro-enterologic surgery

2

Gastroenterology

15

General hematology

6

General practice

–

General surgery

3

Geriatrics

–

Immunology

9

Infectious diseases

–

Internal medicine

28

Laboratory medicine

5

Maxillo-facial surgery

2

Microbiology

–

Nephrology

102

Neurology

24

Neuro-psychiatry

4

Neurosurgery

5

Nuclear medicine

1

Obstetrics and gynecology

1

Occupational medicine

–

Ophthalmology

8

Orthopaedics

3

Otorhinolaryngology

3

Paediatric surgery

18

Paediatrics

128

Pathology

3

Pharmacology

–

Physical medicine and rehabilitation

1

Plastic surgery

2

Podiatric medicine

–

Podiatric surgery

2

Psychiatry

1

Public health and preventive medicine

2

Radiology

2

Radiotherapy

2

Respiratory medicine

21

Rheumatology

5

Stomatology

1

Thoracic surgery

–

Tropical medicine

–

Urology

5

Vascular surgery

–

Venereology

1

Other

13

Main professional sector (> 50% of the working time)

Public

403 (95.3)

Private

11 (2.6)

Equally

9 (2.1)

Main professional role

Administration

11 (2.6)

Diagnosis and treatment

353 (83.5)

Research

35 (8.3)

Teaching

9 (2.1)

Other

15 (3.5)