Characterization of patients treated at a rare disease referral service: a descriptive study, 2016-2021
2024
Study on Rare Disease Patients' Treatment
publication
Author Information
Author(s): Carvalho EA, Hopker RH, Pedroso GH, Almeida LS, Pacher JAT, Antônio ALM, Souza J, Zeny MS, Santos MLSF, Valle DAV, Andrade FA
Hypothesis
The implementation of public policy for rare diseases may be associated with a shorter average diagnosis time.
Conclusion
The study indicates positive effects from the implementation of the referral service for rare diseases.
Supporting Evidence
- The study suggests that the implementation of the rare disease referral service has positive effects.
- Patients in rural areas of Paraná experience longer diagnostic delays.
Takeaway
This study shows that having a special service for rare diseases can help patients get diagnosed faster.
Limitations
The study does not assess the efficiency of the health program implementation due to methodological constraints.
Participant Demographics
Patients from the interior of Paraná faced greater diagnostic delays.
Digital Object Identifier (DOI)
Want to read the original?
Access the complete publication on the publisher's website