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Clinical experiments for Huntington's disease : Recommendations to medical researchers regarding how to inform potential participants

Petersen, Marsanna LU ; Hagen, Niclas LU ; Torkelson, Eva LU and Lundin, Susanne LU orcid (2016) In Working Paper in Medical Humanities 2. p.1-33
Abstract
Huntington's disease (HD) is a severe, genetic brain disorder that causes great suffering and leads to an early death. The medical research team in the project Treatments of the Future at Lund University aims to develop a new molecular gene therapeutic method that will give the possibility to cure the disease. The authors’, social- and cultural scientists, mission is to develop recommendations for how information should be designed to potential research subjects in an experimental gene therapy study regarding HD. More specifically, to find and recommend a model that makes it possible for individuals who are affected by HD to decide if they want to participate as research subjects in the clinical trials within Treatments of the Future.
Please use this url to cite or link to this publication:
author
; ; and
organization
publishing date
type
Working paper/Preprint
publication status
published
subject
in
Working Paper in Medical Humanities
volume
2
pages
33 pages
publisher
Lund University Libraries
language
English
LU publication?
yes
id
f5db1332-e8f2-42fe-83d7-eed2a1869196
alternative location
http://journals.lub.lu.se/index.php/medhum/article/view/15789/14268
date added to LUP
2016-05-01 19:00:15
date last changed
2021-09-21 02:31:26
@misc{f5db1332-e8f2-42fe-83d7-eed2a1869196,
  abstract     = {{Huntington's disease (HD) is a severe, genetic brain disorder that causes great suffering and leads to an early death. The medical research team in the project Treatments of the Future at Lund University aims to develop a new molecular gene therapeutic method that will give the possibility to cure the disease. The authors’, social- and cultural scientists, mission is to develop recommendations for how information should be designed to potential research subjects in an experimental gene therapy study regarding HD. More specifically, to find and recommend a model that makes it possible for individuals who are affected by HD to decide if they want to participate as research subjects in the clinical trials within Treatments of the Future.<br/>}},
  author       = {{Petersen, Marsanna and Hagen, Niclas and Torkelson, Eva and Lundin, Susanne}},
  language     = {{eng}},
  month        = {{04}},
  note         = {{Working Paper}},
  pages        = {{1--33}},
  publisher    = {{Lund University Libraries}},
  series       = {{Working Paper in Medical Humanities}},
  title        = {{Clinical experiments for Huntington's disease : Recommendations to medical researchers regarding how to inform potential participants}},
  url          = {{http://journals.lub.lu.se/index.php/medhum/article/view/15789/14268}},
  volume       = {{2}},
  year         = {{2016}},
}