Ethical review of research into rare genetic disorders.

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

Who cites it

12 citing papers in PubMed.

1. Patient and clinician opinions of patient reported outcome measures (PROMs) in the management of patients with rare diseases: a qualitative study.Health and quality of life outcomes · 2020
   Article
2. A decision tool to guide the ethics review of a challenging breed of emerging genomic projects.European journal of human genetics : EJHG · 2016
   Review
3. Satisfaction with life in adults with Marfan syndrome (MFS): associations with health-related consequences of MFS, pain, fatigue, and demographic factors.Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation · 2016
   Article
4. The unintended implications of blurring the line between research and clinical care in a genomic age.Personalized medicine · 2014
   Article
5. Health-related quality of life for children with rare diagnoses, their parents' satisfaction with life and the association between the two.Health and quality of life outcomes · 2013
   Article
6. The changing landscape of genetic testing and its impact on clinical and laboratory services and research in Europe.European journal of human genetics : EJHG · 2012
   Article
7. Genetic research on rare familial disorders: consent and the blurred boundaries between clinical service and research.Journal of medical ethics · 2008
   Article
8. Research governance: ethical issues.Journal of the Royal Society of Medicine · 2006
   Review
9. Ethics review of research and audit.BMJ (Clinical research ed.) · 2005
   Article
10. Research bureaucracy in the United Kingdom: practical example illustrates problems of ethical review of genetics.BMJ (Clinical research ed.) · 2004
    Article
11. Research bureaucracy in the United Kingdom: seeking a balance: response from the Department of Health and COREC.BMJ (Clinical research ed.) · 2004
    Article
12. Clinical research under the cosh again.BMJ (Clinical research ed.) · 2004
    Article

Corrections and comments

• Commented on by
  Clinical research under the cosh again.2004
• Commented on by
  Research bureaucracy in the United Kingdom: seeking a balance: response from the Department of Health and COREC.2004
• Commented on by
  Research bureaucracy in the United Kingdom: practical example illustrates problems of ethical review of genetics.2004

Authors and funding

4 authors.

Funding

No grant is acknowledged in the PubMed record.

Abstract

PubMed holds no abstract for this paper.

Indexed as