Dawn Radtke, Clinical Research Coordinator, spoke with HOPES about the research that is conducted at the HCMC Center of Excellence in Minneapolis. The Center has been directly involved with several clinical studies including some drug trials. Although the clinic is not engaged in HD research on the molecular level, the HCMC is affiliated with the University of Minnesota where many groups are researching HD-related biological mechanisms. Several factors are considered when the clinic chooses which studies in which to participate: time involvement for participants and medical staff as well as whether the clinic has an appropriate patient population for the study. Research is mainly focused on relieving the symptoms of HD.
From Ms. Radtke's experience with patients, families and caregivers are responsive to the idea of participating in clinical trials. Most HD patients are eager to take part in drug studies because receiving a new drug that is not yet FDA approved may alleviate symptoms. Patients are warned, however, that they may receive a placebo rather than the new drug itself.
HCMC researchers face several challenges when conducting clinical trials. Ms. Radtke tells HOPES that the greatest challenge in managing research at the Center of Excellence is time restraints. Some clinical trials require a significant time commitment from participants and all of the studies require time from the medical staff. Another challenge is keeping study participants involved. Although caregivers and family members are usually able to maintain their involvement in studies, it is difficult for HD patients to continue committing to studies as their disease progresses.
The HCMC Center of Excellence has been directly involved with several clinical studies and is currently collecting data for PHAROS, PREDICT-HD, and 2CARE.
PHAROS or the Prospective Huntington At Risk Observational Study monitors individuals who are at risk for HD but have not received genetic testing for the HD allele. By recording characteristics of these participants over time, researchers hope to better understand the progression of HD. At the HCMC Center of Excellence, Dr. Martha Nance is the Primary Investigator and Dr. Scott Bundlie is the independent rater who separately scores participants to ensure that the data is consistent. Ms. Radtke showed HOPES some of the PHAROS tests that are conducted at the HCMC Center of Excellence. Participants are monitored through performance on a verbal fluency test, the Stroop Test, the UHDRS, and questions about frequency and severity of behavioral symptoms.
The PREDICT-HD study is similar to PHAROS, but enrolled subjects are certain that they have the HD allele. The brains of both participants with HD and participants who are at-risk for HD are monitored and compared to better understand the neurological changes associated with HD.
2CARE is a phase III clinical trial investigating the therapeutic effectiveness of the anti-oxidant coenzyme Q10. Enrolled subjects have responded with enthusiasm to this drug trial. To learn more about HD and coenzyme-Q10 click here.
To learn more about clinical trials like the ones conducted at the HCMC and how drugs are developed click here.
Last Modified: 05/22/2009
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