HDDW will partner with each participant's primary care physician. Each therapeutic trial will occur at this primary medical site, where, if estimates by Huntington's organizations are correct, more than 90% of HD individuals and families already receive medical care. As such a beneficial component of these trials is the updating of HD education to medical providers at this important site of care. For its part, HDDW will promote drug availability. We will use only FDA approved drugs and available over-the-counter agents, as well as edible natural products in these therapeutic trials.
A secondary HDDW objective for the individual participant is to measure and compare potential disease-modifying activities of drugs or agents used over time. HDDW will be responsible for monitoring and coordinating disease progression measurements, which will in turn, be supplied to the primary care physician for medical decision making. It is HDDW's hope that sequential information obtained in this manner will provide the participant and primary physician ability for improved decision making and will promote the best personalized medical care for the individual.
To limit interference with Huntington Study Group (HSG), HDDW will make every attempt not just to inform, but to encourage participation for those HD individuals who fit inclusion criteria for HSG studies. Likewise we will utilize great care in selection of drugs within geographic areas where similar drug studies are planned or ongoing. Of course, this HDDR goal can only be met if HSG and other organizations keep us informed of planned studies.