Being a brain or tissue donor can
be a powerful way of making your illness more meaningful by helping others and helping
advance the science that may lead to better treatments and cures. If you are interested,
please click on the links below for more information or contact the Office
of Decedent Affairs at 720-848-4356.
For additional information on brain tissue programs, visit the Harvard Brain
Tissue Research Center.
For brain tissue donation specific to Parkinson's disease, visit the
Parkinson's Disease Foundation.
For Brain tissue programs specific to dystonia, visit the Dystonia Medical Research Foundation.
For brain tissue programs specific to Tourette Syndrome, visit the Tourette Syndrome Association.
Clinical research refers to any scientific research
that works directly with people. This could include research to develop better tests
for diagnosing neurologic illnesses, clinical trials of new drugs or therapies,
or large-scale implementation studies of new models of care. Taking part in a research
study is one of the most unique and powerful gifts people affected by neurologic
illnesses can give towards improving care for people who will be affected by their
illness in the future. Every test, treatment and therapy we have, from medications
to physical therapy, comes to us because of the time and dedication of research
At the University of Colorado Supportive and Palliative
Care Program, we are broadly interested in pursuing research that will improve the
quality and accessibility of patient and family-centered care for persons affected
by neurological illnesses. This includes:
· Mechanistic Studies: We are actively pursuing research
to improve our understanding of the causes of difficult to treat symptoms such as
fatigue and cognitive dysfunction.
· Clinical Trials: We are conducting studies to develop
and test new treatments and therapies for difficult to treat symptoms such as fatigue
and cognitive dysfunction using a wide range of approaches including exercise, medications,
brain stimulation and complementary and alternative approaches such as acupuncture,
music therapy and meditation.
· Biomarkers and Outcome Measures: We are conducting research to
develop and validate better outcome measures and biomarkers for difficult to treat
symptoms. Improved outcome measures (e.g. surveys and scales) will allow us to measure
what matters most to patients and improve the quality of clinical trials. Biomarkers
(such as new brain scanning techniques) may allow us to diagnose conditions earlier
and track the effect of therapies more accurately.
· Comparative Effectiveness and Health
effectiveness studies differ from clinical trials in that they are designed to compare
two or more currently available therapies under real-world conditions. We are currently
comparing the effectiveness of our palliative model of care to current standards
of care for Parkinson’s disease and other illnesses in terms of patient and caregiver
quality of life. We are also pursuing research to better understand the costs, savings
(e.g. less aggressive care near the end of life) and overall value of palliative
care for neurologic disorders.
· Improving Models of Care: We are constantly looking for
ways to improve the quality and accessibility of care we provide. To this end we
are pursuing studies to better understand the needs and preferences of patients
and families, creating checklists and standardized models for clinics so that other
institutions can replicate our care, and developing new means of delivering care
such as telemedicine.
· Implementation and Dissemination
we develop better models of care it is critical that we find ways of putting these
models into practice in the community. As an example, we are currently conducting
a study of 18 community neurology practices across California, Colorado and Wyoming
that will train community neurologists in the fundamentals of palliative care and
use telemedicine to provide virtual house calls for team-based services (e.g. social
work, chaplain) to their patients.
For up to date information on our research, please visit our Clinical Trials website. For information
regarding participation in upcoming research studies, please contact Neurology Research
Recruitment at 303-724-4644 or Nicola.Haakonsen@ucdenver.edu.