In order to attract more participants in studies, the studies must be located nearby. Traveling with a person with Alzheimer's disease can be difficult and complicated, especially in the moderate and late stages of the disease. If it is impossible to have the studies available in more locations, then the study should include transportation, food, and lodging as appropriate. Many people with Alzheimer's disease and ...more »
Studies do not exist for relatives with clear family history until much later in age when symptomatic or too ill. There are only online Q&A participation and zero clinical data gathered. With current studies the health history of younger relatives can yield information with more diagnosis that were not evaluated in relatives with Alzheimers.
I am 53 and have younger onset Alzheimer's. I have been a participant in the Biogen Aducanumab clinical trial for 20 months. During that time I have had many conversations with my community of friends also living with younger onset Alzheimer's. There is tremendous value hearing a clinical trial story from people living with the disease and who are actively and joyfully participating in a clinical trial. I'm able to ...more »
Physicians often do not tell patients they are diagnosed with dementia or Alzheimer's disease (AD), yet it might be stated in medical records. They don't want to burden families, so then they don't even diagnose patients with AD/dementia. Patients are hesitant in seeking information, services, or a diagnosis and important discussion about signs/symptoms of AD/dementia with a doctor possibly because no protections are ...more »
Make all the test results administered for the trial available to the trial participant and their spouse/guardian. My husband recently underwent a 1-1/2 yr. trial at a university and they did the APO studies, spinal taps, MRI/PET scans, etc. which are very expensive tests, etc. but trial regs wouldn't allow them to divulge the results. For those who want them and are willing to sign accordingly to relieve the institution ...more »
Alzheimer’s disease is the most prevalent but it is only one of several neurodegenerative diseases that lead to dementia. The heterogeneity among types of dementia and people impacted is part of what makes dementia care such a challenge for the US Healthcare system. For those facing one of the “related dementias” like frontotemporal degeneration (FTD) the challenge is compounded by the fact that most people and many medical ...more »
Use existing resources in the community to bring clinical trials TO the patient, rather than having them commute to trial sites. This can be accomplished with technology, and via community health workers, medical students, retired nurses, etc. We need to think more creatively about how we utilize our existing resources to make trials accessible. There is no reason, in 2018, that we are still asking clinical trial participants ...more »
I've signed up for several studies and have found it off-putting that each time, I'm asked to fill out the same ream of paperwork—probably five or more double-sided sheets. When I explain that they already have all this information on me, they just say, "Sorry, each study requires its own forms." I point out that they could keep a basic set on file and give a copy to each study, which could then ask for any extra particulars, ...more »
I’ve signed up for several sites that match researchers to willing participants, and I mark the type of trial I am interested in. But they contact me about a variety of trials that don’t apply to me instead. Sometimes a trial seems to apply to me, but after applying to be in the trial and submitting all kinds of information, I find a list of requirements that I don’t match. Why not make it clear before the person applies? ...more »
Test models that move clinical research from the site to the community to lower barriers for volunteering. Consider use of mobile units, home or other residential settings, online assessments, satellite offices, and telemedicine, and seek flexibility from the study sponsors or health authorities.
Please include those in the age range, with family history, to participate in the study. I believe that genetic history could give you a percentage chance of developing Alzheimers. Add to this patient history of preventative care (statins, BP and diuretic meds, vitamins and natural supplements). Testing to consist of neurological evaluation and indicative blood tests. If it is determined early on that the treatment ...more »
Urban and rural locations can encounter the same transport challenges, long distances between home and clinical trial site, stressful traffic, challenging weather and cost of parking. Further, for many persons participating in Alzheimer's clinical trials, their caregivers are also elderly and are unable to endure the financial and physical stress of driving under stressful conditions. To address these challenges, in our ...more »
Allow participants in a study to have access to their test results when the study is concluded.
Start a relationship with care giver support groups and organizations. Offer caregiver support in addition to study information. Begin Caregiver Support groups in key demographic areas for additional exposure to study participation as well as other community resources.
My Mother was diagnosed with dementia 7 years ago. Her mother had dementia as did all her mother's 10 siblings. My Grandfather on my paternal side had dementia. I was 31 years old when my Mother was diagnosed and started looking for a study that wanted to look at younger people who didn't show signs of dementia, but had a history of dementia in their family, but I haven't found one yet. I have dementia on my maternal ...more »