[Participant-funded clinical trials on rare diseases]. / Ensayos clínicos en enfermedades raras financiados por los participantes.
An Pediatr (Engl Ed)
; 93(4): 267.e1-267.e9, 2020 Oct.
Article
em Es
| MEDLINE
| ID: mdl-32499195
ABSTRACT
The development of medicines for certain rare diseases can be frustrated by lack of funding. In certain cases the patients themselves, or their relatives, occasionally fund the clinical trial in which they will be treated with the investigational medicine. There are 3models of self-funded research 2of them, "pay to try" and "pay to participate", have already been put into practice. The third, the "plutocratic" proposal, which has been recently put forward is still a theoretical model. In this work the scientific, social and ethical benefits and risks of the 2clinical research models, "pay to participate" and the "plutocratic" proposal, are reviewed. Patient-funded clinical trials are frequently performed through crowdfunding. The most controversial aspects of this funding modality are also addressed in this article from several perspectives. Finally, a future scenario that would allow the launching of self-funded clinical trials in Spain by the "plutocratic" proposal is proposed.
Palavras-chave
Texto completo:
1
Coleções:
01-internacional
Base de dados:
MEDLINE
Assunto principal:
Produção de Droga sem Interesse Comercial
/
Apoio à Pesquisa como Assunto
/
Ensaios Clínicos como Assunto
/
Seleção de Pacientes
/
Doenças Raras
Tipo de estudo:
Health_economic_evaluation
/
Prognostic_studies
Aspecto:
Ethics
Limite:
Humans
País/Região como assunto:
America do norte
/
Europa
Idioma:
Es
Revista:
An Pediatr (Engl Ed)
Ano de publicação:
2020
Tipo de documento:
Article