Our Research
Trend Community Voice Report
Trend Community leverages social media to better understand disease burden. They have analyzed the wolfhirrschorn.org Facebook page to produce The Community Voice Report for the Wolf Hirschhorn Community. The Community Voice Report follows the FDA’s patient input Guidelines for Patient-Focused Drug Development meetings and aims to quantify disease burden, disease management strategies, and possible unmet needs.
Research Partners
WHS Growth Chart
Click here to view more information about the WHS growth chart.
NCATS Narrative on WHS
Click here to view more information about WHS including symptoms, causes, getting a diagnosis and resources.
Existing Research
One of the reasons we started Liv4TheCure is because of the LACK of research into Wolf Hirschhorn Syndrome or genetic deletions in general. As we move forward and fund research this page will have information regarding current studies and research. Until then we will post studies around Wolf Hirschhorn Syndrome that currently exist or other rare genetic deletions.
Pub Med - Current articles about Wolf Hirschhorn Syndrome
Pub Med - Current articles about chromosomal deletions
A survey of anti epileptic drug responses identifies drugs with potential efficacy for seizure control in Wolf–Hirschhorn syndrome (2017)
A case for cannabidiol in Wolf–Hirschhorn syndrome seizure management (2016)
An epidemiological study of Wolf-Hirschhorn syndrome: life expectancy and cause of mortality (2001)
Chromsome 18 Clincial Research Center (multiple articles)
Gene review of WHS from the NIH (2008)
Cell - autonomous correction of ring chromosomes in human induced pluripotent stem cells
Neurodevelopmental copy-number variants: A roadmap to improving outcomes by uniting patient advocates, researchers, and clinicians for collective impact
Studies
Zoegnix Sibling Voices Study
Explanations
DNA Deletion and Duplication and the Associated Genetic Disorders (2008)
Disorders caused by Chromsomal Abnormalities (2010)
Where to Find a Clinical Trial?
We’ve partnered with ResearchMatch to help find cures for rare diseases!
ResearchMatch is a national registry designed to promote the completion of clinical trials by matching volunteers interested in research with researchers nationwide. Funded by the National Center for Advancing Translation Science, which is part of the NIH, ResearchMatch is disease-neutral and institution-neutral so that participants with and without health problems can be included and valued.
Get involved. Get Matched!