HD research organisations
What is the CHDI Foundation?
CHDI is a private, not-for-profit research organisation. We work with an international network of scientists to discover drugs that slow the progression or delay the onset of Huntington’s disease (HD).
We seek to accelerate scientific progress by serving as a collaborative enabler. We encourage and support cooperation and collaboration among HD researchers. Our strategy is to encourage researchers to develop practical ideas, useful research materials, and powerful technologies, often by providing financial support.
Our activities extend from exploratory biology to the identification and validation of therapeutic targets, and from drug discovery and development to clinical studies and trials.
You can find out more on the CHDI Foundation webpage…
European Huntington’s Disease Network (EHDN)
What is the European HD Network?
- The European HD Network should provide a platform for professionals and people affected by Huntington’s disease and their relatives to facilitate working together throughout Europe
- The European HD Network should facilitate natural history studies and interventional trials meeting high standards (‘Good Clinical Practice’ = GCP) thus helping on the road towards a cure of HD
- The European HD Network should be a true network in that all participants involved can take a lead and propose, conduct and publish studies
What does the European HD Network provide?
- An infrastructure for large scale clinical trials on Huntington’s disease throughout Europe (database, IT-tools, monitoring personal etc.)
- An IT platform for communication tools (in the respective native languages) and e-trials
- A forum for close cooperation of basic scientists and clinicians
- Low threshold (native language!) support for study sites by language group coordinators
For more information please see the EHDN website: http://www.euro-hd.net/
Huntington Study Group (HSG)
The Huntington Study Group (HSG) is a non-profit group of physicians and other health care providers from medical centers in the United States, Canada, Europe, Australia, New Zealand and South America, experienced in the care of Huntington patients and dedicated to clinical research of Huntington disease. The HSG was formed in 1993, prompted by the recognition that clinical research in Huntington disease (HD) required the participation of large numbers of research patients (subjects) under the cooperative care of skilled and experienced research physicians.
The HSG aims to advance knowledge about the cause(s), disease progression and treatment of HD and related disorders. The HSG is committed to:
- Open communication within the scientific community
- Full disclosure of research results in scientific journals after independent expert review
- Revealing all potential conflicts of interest of the group and each HSG member
- Democratic governance of its organizations and activities
You can find out more about the on the HSG website: http://www.huntington-study-group.org/
Hereditary Disease Foundation
The Hereditary Disease Foundation (HDF) aims to cure genetic illness by supporting basic biomedical research. The HDF was started by Dr. Milton Wexler in 1968 when his wife was diagnosed with Huntington’s disease (HD). The Foundation uses a variety of strategies - workshops, grants, fellowships, and targeted research contracts - to solve the mysteries of genetic disease and develop new treatments and cures.
The Hereditary Disease Foundation uses Huntington’s disease as a model for hereditary disease research because it is triggered by a mutation of one single gene.
The Hereditary Disease Foundation has given over $50 million to support pioneering research in genetics, gene therapy, molecular and cell biology, cell survival and death, animal models, neurophysiology, neuropharmacology and other areas relevant to understanding inherited diseases.
The Hereditary Disease Foundation played a key role in the discovery of the HD gene, which was localized in 1983 and isolated in 1993. The HDF recruited and supported more than 100 scientists worldwide who worked together as the Huntington’s Disease Collaborative Research Group in a ten-year search to capture the gene. The New York Times called the quest for the HD gene ‘legendary in less than a decade’; the gene, itself, the most ‘coveted treasure in molecular biology’.
New technologies developed during the HD gene search - supported by the Hereditary Disease Foundation - have been widely used in mapping genes for other disorders. These successes helped to launch the Human Genome Project.
You can find out more of the HDF website: http://www.hdfoundation.org/