Posts by Sophie Höhn

Outcome measures used in Huntington D...

Outcome measures used in Huntington Disease Pharmacological Trials

December 9, 2014 An article published in the Journal of Huntington’s Disease details the outcome measures commonly used in Huntington Disease (HD) trials. Identification of the gene mutation causing HD symptoms has raised hopes for new treatments. Designing efficient clinical trials and identifying optimal outcome measures are therefore essential to develop innovative therapies. While the National Institute […]

E-Rare call for projects

Consult the pre-announcement of E-Rare 7th joint call for research projects on rare diseases (JTC 2015)

NIH revises its genomic data sharing ...

November 19, 2014 The US National Institutes of Health (NIH)’s has issued the data sharing policy replacing the previous Genome-Wide Association Studies (GWAS) data sharing policy, issued in 2007. It will apply to all NIH-funded, large-scale human and non-human projects that generate genomic data beginning with funding applications submitted by January 25, 2015. According to […]

Rare Diseases Clinical Research Netwo...

November 19, 2014 Earlier last month, the National Institutes of Health (NIH) announced $29 million towards expanding the National Center for Advancing Translational Sciences (NCATS)’ collaborative Rare Diseases Clinical Research Network (RDCRN) which is dedicated to furthering translational research and investigating new treatments for patients with rare diseases. Currently comprising of 2600 researchers, the NIH […]

Article illustrates treatment of advi...

November 7, 2014 Adaptive designs allow planned modifications based on data accumulating within a study. The promise of greater flexibility and efficiency stimulates increasing interest in adaptive designs from clinical, academic, and regulatory parties. When adaptive designs are used properly, efficiencies can include a smaller sample size, a more efficient treatment development process, and an […]

Disease Manifestation Network: a nove...

Disease Manifestation Network: a novel phenotype network database

November 7, 2014 To add to our understanding of the causative aspects of rare disease, a group from Case Western Reserve University has published the creation of a disease phenotype network that aids in linking complex clinical phenotypes. This article, published in Journal of Biomedical Informatics, describes a novel method of creating phenotype network database […]