rare diseases with childhood onset
Conditions
Interventions
Group 1: Using an online questionnaire, members of Facebook support groups for rare diseases with childhood manifestation answer questions about usage, (dis-)advantages and concerns regarding the use
Sponsors
Institut für Humangenetik, Universität Heidelberg
Eligibility
Sex/Gender
All
Inclusion criteria
Inclusion criteria: The test persons are members of Facebook groups with the following inclusion criteria: Topic of the Facebook group is a rare disease with childhood manifestation. These rare diseases are listed in the database Orphanet as disease with age of onset antenatal, conatal/neonatal, infancy, childhood or adolescent. The inclusion criteria are tested with questionnaire item 1.1 „Are you part of a Facebook support group for a rare disease?“, answer must be „yes“.
Exclusion criteria
Exclusion criteria: Exclusion criterion is the reponse „no“ to questionnaire item 1.1 „Are you part of a Facebook support group for a rare disease?“
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| The primary outcome is an overview of usage of the social network „Facebook“ as a tool for online support groups for rare diseases with childhood manifestation. This will be evaluated in 2019 using an online questionnaire. | — |
Secondary
| Measure | Time frame |
|---|---|
| The secondary outcome is to analyse the group members’ view on opportunities, limitations, and privacy concerns regarding the use oft he social network „Facebook“ as a medium for support groups for rare diseases with childhood manifestation. | — |
Countries
Germany
Contacts
Public ContactChristian Schaaf
Institut für Humangenetik, Universität Heidelberg
Outcome results
None listed