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Table 1 Experience and background of the participants (Q1- Q3)

From: Identifying project topics and requirements in a citizen science project in rare diseases: a participative study

Item

Frequency

Q1: Group of participants (multiple answers possible)

Affected persons and relatives

68

Students

3

Medical professionals

3

Interested citizens

6

Others

6

No response

0

Q2: Previous experience of participants (multiple answers possible)

Experience in the subject field of rare diseases

42

Scientific work

18

Statistics

10

Design and creation

5

Computer science

5

Citizen science

4

Others

16

No response

10

Q3: Expertise in RD gained by (multiple answers possible)

Being affected by an RD

56

Being relative of a affected person

9

Studies

6

Profession

5

Others

3