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HDTrials.org is the web initiative of major Huntington organizations and volunteer groups from the United States and Canada, such as the Huntington Society of Canada (HSC), Huntington Disease Society of America (HDSA), and many more. All have come together to provide unified support for clinical trials because never before in the history of Huntington disease has there been a time when so many potential treatments are in, or planned for clinical trials.
Just as it took the collaborative efforts of many Huntington families and scientists to find the gene more than a decade ago; it will take great and sustained clinical trial efforts from all organizations, and most importantly from large numbers of Huntington volunteers to move research to where it matters most: treatments for people. Every single clinical trial volunteer is a hero for this generation.
To enable clinical trial participation, the HDTrials.org website will perform two functions:
• Provide quick notification to Huntington families of opportunities for participation in clinical trials and studies through a confidential email list. This information can speed the time it takes to recruit participants.
• Create a separate voluntary and confidential recruitment list using only postal code as identifier. This information will help our scientists identify locations where subjects for clinical trials are available and interest in clinical trials is highest.
Your privacy and confidentiality are primary concerns to the organizers of this initiative, and the HDTrials.org site has been created with this in mind. The website will be hosted on a separate server, completely apart from the websites and databases of any of the participating organizations, including HSC and HDSA. HDSA has hired an administrator to create and manage the site who has no involvement and no responsibilities with any HDSA website, database or program. In order to further secure your privacy, you may wish to create a new email address through gmail.com, hotmail.com, yahoo.com or another free web-based email provider. Your email address will never be distributed. As stated above, the only use of the postal code information will be to determine if there are enough potential candidates before a study or trial is planned in a particular geographic area.
There can be no treatment advances in Huntington’s without clinical trials. Vitally important are clinical studies that increase the understanding of the natural course of the disease. Results from these studies: PREDICT and COHORT in Canada and the United States, and TRACK-HD in Canada and Europe will help find best indicators, such as biomarkers, that can be used to speed future trials that test drugs. Already, several hundred clinical trial volunteers are needed for ongoing drug trials; and even larger numbers will be needed for those that are planned.
The more efficiently we enroll every single participant for every trial, the more quickly we will have results – and treatments for Huntington’s families.
HDTrials.org will help meet recruitment goals by getting information out quickly, and by creating a voluntary listing. Please sign up today – and encourage your family members and friends in the HD community to do the same. Remember, that together we have the power to speed treatments for Huntington families.
Please visit HDTrials.org to find out more. Please click here for the HD Trials brochure.
The Roster is a unique nationwide information resource dedicated to assisting scientific research on Huntington disease. The National Research Roster for Huntington Disease Patients and Families was established in 1979 at Indiana University in response to a recommendation from the Commission for the Control of Huntington’s Disease and its Consequences. The National Institute of Neurological Disorders and Stroke, a branch of the National Institutes of Health has funded the Roster since its inception. The Roster computerizes the names of families, including information about the history of HD in the family (family trees) and other related data. This information identifies HD patients and families who are interested in participating in research projects.
The goal of the Roster is to act as a link between patients and families affected by Huntington disease and scientists interested in gaining a better understanding of this disorder. Many scientists are eager to study Huntington disease but have difficulty locating people affected by the illness. Likewise, many patients are interested in participating in research about their disease, but are not aware of scientific studies that may be available. The Roster works to unite patient and scientist in order to encourage successful research studies which may lead to new treatments and an eventual cure.
Scientists interested in studying HD may submit two types of requests for information contained in the Roster. The two types of information requested are anonymous information and identifiable information. Anonymous information does not contain any names or personal identifiers, and can be given to researchers without having to contact Roster families. Identifiable information includes data such as names, dates of birth, and family structure. Some researchers may request contact with families to obtain specific information. In these instances, the Roster will contact participants to ask if they are willing to share identifiable information for a research project. All information requests must be reviewed and approved by a Scientific Advisory Committee and the National Institutes of Health.
For more information please visit the HD Roster website