Open Studies
ALLFTD
ARTFL-LEFFTDS Longitudinal Frontotemporal Lobar Degeneration: a multisite research consortium
ALLFTD is a multisite research project aimed at understanding the changes in brain function that occur as a result of frontotemporal lobar degeneration (FTLD) syndromes. FTLD syndromes can include bvFTD, bvFTD with ALS, PPA, PSP, or CBD. Some forms of FTLD are genetic, while others are not. ALLFTD is interested in all forms of FTLD.
We can learn about changes in your brain in a variety of ways, including a clinical examination, memory and thinking tests, and MR imaging of your brain. We also measure different proteins in your blood or cerebrospinal fluid (CSF) that we think change in response to disease progression.
If you are interested in helping us learn more about FTLD and you’ve been diagnosed with an FTLD syndrome or are at risk due to your family history, please consider participating in our ALLFTD Study.
For more information about this study, please contact Danelle Carter:
Website: https://www.allftd.org/
Email: [email protected]
Phone: (303) 724-5494
Alector
A Phase 3, Multicenter, Randomized, Double-Blind, Placebo-Controlled Study to Evaluate the Efficacy and Safety of AL001 in Individuals at Risk for or With Frontotemporal Dementia Due to Heterozygous Mutations in the Progranulin Gene
- Ad component form pending approval (Dr. Pressman’s Website > Content > Advertising Forms)
- Also on R drive, Michelle emailed Natalie for status update on approval
Conversational Speech in the Diagnosis of Neurocognitive Disorders
- Ad component form not approved ((Dr. Pressman’s Website > Content > Advertising Forms)
- Gordon created and was working on this form, but then he left and we are not sure if it was submitted for approval
Neurology studies at the University of Colorado Anshutz Medical Campus
Open studies with the University of Colorado Alzheimer’s and Cognition Center
https://medschool.cuanschutz.edu/alzheimer/get-involved/open-studies
Importance of Cultural Inclusion
Clinical trials are research studies on human subjects that aim to evaluate surgical, medical, or behavioral intervention. At the heart of these trials are people, who help to continue the development of new medicines and enhance treatments and the standard of care. These trials affect individuals of all backgrounds and walks of life, and the people actively participating in research studies need to be representative of the whole population. Unfortunately, that is often not the case. According to a 2018 editorial from Scientific American, “Nearly 40 percent of Americans belong to a racial or ethnic minority, but the patients who participate in clinical trials for new drugs skew heavily white—in some cases, 80 to 90 percent.”
Diversity is the practice of including or involving individuals from a range of different backgrounds, including different socioeconomic and ethnic backgrounds, and different genders and sexual orientations. Increasing diversity in research among participants and health care providers will improve treatments and medicine for those from diverse backgrounds, making sure these interventions affect all individuals the same.
Improving cultural inclusion in research is essential to providing accurate and effective treatment. Increasing diversity needs to start at the community level. Many minorities do not participate in research due to concerns of discrimination from medical professionals and decreased access to health care facilities. Establishing trust within the community, maintaining effective communication, and finding solutions to logistical and financial constraints will begin to increase diversity in research over time.
Dr. Pressman listed eight key points for improving the treatment of individuals with Alzheimer’s Disease in our diverse Colorado community in a recent talk about outreach. These are examples of first steps that can be taken to create a culturally inclusive environment within a research setting:
- Work with community members to understand brain health, early warning signs of dementia and benefits of early detection and diagnosis for person’s with dementia and their caregivers.
- Encourage community members to use effective interventions, best practices, and traditional wellness practices to protect brain health, address, cognitive impairment and support persons with dementia and their caregivers.
- Provide information and tools to help older adults with dementia and their caregivers anticipate and respond to challenges that typically arise during the course of dementia
- Promote engagement among tribal leaders in dementia issues by offering information and education on the basics of cognitive health and impairment the impact of dementia on caregivers and communities, and the role of public health approaches in addressing this priority problem.
- Support collection and use of local data on dementia and caregiving in American Indians and Alaskan Natives (AIAN) communities to plan programs and approaches.
- Promote the inclusion of healthcare quality measures that address both cognitive assessments and the delivery of care to AIANs with dementia
- Educate healthcare and aging services professionals in Indian Country about the signs and symptoms of dementia and about caregiving for persons with dementia.
- Educate healthcare and aging services professionals on the best ways to support families and caregivers of older adults with dementia.
For more information on the importance of cultural inclusion in research, please visit:
Resources for individuals with dementia:
- Dementia Friendly Denver (https://www.dementiafriendlydenver.org/)
- Dementia Action Alliance (https://daanow.org/)
- Alzheimer’s Association (https://alz.org/)
Additional Resources
Communication Tips
Clinical trials are research studies on human subjects that aim to evaluate surgical, medical, or behavioral intervention. At the heart of these trials are people, who help to continue the development of new medicines and enhance treatments and the standard of care. These trials affect individuals of all backgrounds and walks of life, and the people actively participating in research studies need to be representative of the whole population. Unfortunately, that is often not the case. According to a 2018 editorial from Scientific American, “Nearly 40 percent of Americans belong to a racial or ethnic minority, but the patients who participate in clinical trials for new drugs skew heavily white—in some cases, 80 to 90 percent.”
Diversity is the practice of including or involving individuals from a range of different backgrounds, including different socioeconomic and ethnic backgrounds, and different genders and sexual orientations. Increasing diversity in research among participants and health care providers will improve treatments and medicine for those from diverse backgrounds, making sure these interventions affect all individuals the same.
Improving cultural inclusion in research is essential to providing accurate and effective treatment. Increasing diversity needs to start at the community level. Many minorities do not participate in research due to concerns of discrimination from medical professionals and decreased access to health care facilities. Establishing trust within the community, maintaining effective communication, and finding solutions to logistical and financial constraints will begin to increase diversity in research over time.
Dr. Pressman listed eight key points for improving the treatment of individuals with Alzheimer’s Disease in our diverse Colorado community in a recent talk about outreach. These are examples of first steps that can be taken to create a culturally inclusive environment within a research setting:
- Work with community members to understand brain health, early warning signs of dementia and benefits of early detection and diagnosis for person’s with dementia and their caregivers.
- Encourage community members to use effective interventions, best practices, and traditional wellness practices to protect brain health, address, cognitive impairment and support persons with dementia and their caregivers.
- Provide information and tools to help older adults with dementia and their caregivers anticipate and respond to challenges that typically arise during the course of dementia
- Promote engagement among tribal leaders in dementia issues by offering information and education on the basics of cognitive health and impairment the impact of dementia on caregivers and communities, and the role of public health approaches in addressing this priority problem.
- Support collection and use of local data on dementia and caregiving in American Indians and Alaskan Natives (AIAN) communities to plan programs and approaches.
- Promote the inclusion of healthcare quality measures that address both cognitive assessments and the delivery of care to AIANs with dementia
- Educate healthcare and aging services professionals in Indian Country about the signs and symptoms of dementia and about caregiving for persons with dementia.
- Educate healthcare and aging services professionals on the best ways to support families and caregivers of older adults with dementia.
For more information on the importance of cultural inclusion in research, please visit:
Resources for individuals with dementia:
- Dementia Friendly Denver (https://www.dementiafriendlydenver.org/)
- Dementia Action Alliance (https://daanow.org/)
- Alzheimer’s Association (https://alz.org/)