For Clinicians Considering Clinical Research
The Huntington's Disease Society of America, the Huntington Society of Canada, other Huntington organizations and volunteer groups have recently developed a novel system for recruiting interested participants for active HD clinical research. It is called HDTrials.org and it is a confidential e-mail notification system for self identified individuals with an interest in Huntington's disease research.
This purely voluntary effort will help speed clinical studies in HD. Unlike other rosters or institutional patient records, this is a unique system that is managed by an independent organization with special expertise in e-mobilization. It is designed strictly for one-way communication, alerting potential participants of HD research projects that are about to enroll or events needing individuals to participate for HD advocacy, such as the recent open session by the FDA on tetrabenazine. This system is not for requests for contributions or membership drives; rather its sole purpose is to enhance participation in research and advocacy while maintaining the confidentiality of individuals and families involved. Participants will be asked to initially to provide zip codes (on a voluntary basis) so that individuals can be alerted to projects recruiting in specific locales.
A small group of people drawn from the HD lay community will screen all requested one-way messages to ensure that the system alerts potential participants to meritorious projects only. Once received by potential participants, it will be up to them to follow-up directly with research sites or advocacy contacts.
Please download the HDTrials.org Registration Form and submit it to email@example.com. The HDTrials.org evaluation committee, comprised of members of the HD community will respond to your request within two weeks.
If you are planning your research and have questions about aggregate demographic information please contact Francis Walker at firstname.lastname@example.org. Please feel free to contact us with any other questions you may have.Given the recent increase in clinical studies in HD, it is critical to ensure that as many individuals as possible who are interested in HD research and advocacy are informed about available opportunities.
Please encourage your patients and families to participate in HDTrials.org.