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 »
Optimizing Clinical Studies Recruitment
How can we optimize participation in Alzheimer's clinical trials and studies?
The national goal of effectively treating or preventing Alzheimer’s depends on us all -- potential participants and study partners, caregivers, healthcare providers, researchers, agencies and organizations, advocates, pharmaceutical companies, the media, and more. The scientific opportunity to build on what we have learned through research has never been greater. Capitalizing on these opportunities depends on participation and partnership of everyone who is willing and able to volunteer for research and on the support of those volunteers. Only by working together can we succeed in finding ways—and finding them more quickly—to effectively treat and prevent Alzheimer’s and related dementias.
How can the Alzheimer's community encourage and strengthen participation in clinical trials and studies?
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.
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 »
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 »
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 »
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 »
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 »
Allow participants in a study to have access to their test results when the study is concluded.
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 »
Too many academic institutions take forever to open trials and process patients, causing huge loss of potential patients who give up waiting or who are simply never contacted after expressing interest. Continue the trend toward opening trials at community centers where MDs have hospital access for invasive procedures to increase enthusiasm for enrollment and provide access to trials for more patients.
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.
We need clinical studies which do not require participants to travel 100 miles in order to participate. My local community has programs for Alzheimer's awareness but no accessible clinical trials we can sign up for. This area of several adjoining cities has at least 250,000 population. We have "Memory Cafe's" and facilities for care but no trials available. I want to volunteer to be in a trial.
HealthIT policy makers are encouraging the development of apps that allow patients to download all their medical records into one location fully under their control. In January 2019, a law becomes effective that requires healthcare organizations to allow patients to use any app of their choice to download their records. This new technology and law will change healthcare, empowering patients to gather and share their data ...more »
Want more trials for a variety of levels of dementia