Lived experiences of genetic diagnosis for rare disease patients: a qualitative interview study.

Journal Information

Full Title: Orphanet J Rare Dis

Abbreviation: Orphanet J Rare Dis

Country: Unknown

Publisher: Unknown

Language: N/A

Publication Details

Subject Category: Medicine

Available in Europe PMC: Yes

Available in PMC: Yes

PDF Available: No

Transparency Score
3/6
50.0% Transparent
Transparency Indicators
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Core Indicators
Data Sharing
Code Sharing
Evidence found in paper:

"Declarations Ethics approval and consent to participateThis study protocol was reviewed and approved by the Ethics Committee of the University of Vienna, approval number 00606. Written informed consent was obtained from participants to participate in the study. Consent for publicationThe consent to publish the results of the study was included in the informed consent. Competing interestsThe authors have no conflicts of interest to declare. Competing interests The authors have no conflicts of interest to declare."

Evidence found in paper:

"Funding Open access funding provided by University of Vienna."

Protocol Registration
Open Access
Paper is freely available to read
Additional Indicators
Replication
Novelty Statement
Assessment Info

Tool: rtransparent

OST Version: N/A

Last Updated: Aug 05, 2025