Consider adding diversity of faculty and staff as one metric in the rating system used for grant applications.
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?
Study children of Alzheimer’s patients who have the Gene APOE-e4
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.
Here in New Braunfels, Texas, we have an annual symposium which my wife and I attend. I'm not sure if ours is unique, but it's worth considering.
Consider adding support for patients and caregivers with Alzheimer’s in order to increase participation. This support could be standardized so as not to bias the research in the control versus research groups.
Search governmental death records to identify Alzheimer's or dementia, etc., as cause and then attempt to follow up with family members, (siblings, off spring, etc.,) to identify illness patterns.
In Louisville more understanding is needed as Altheimers and Parkinson’s is viewed as a mental disability and this second class citizens.
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 »
Ask people who are involved in a study to invite friends and family who meet the criteria to join the study. Offer a cash incentive for finding people who meet the guidelines. People who know someone in the study already are more likely to join the study and stick with it.
Offer study participants free education and counseling on how to avoid getting Alzheimer’s as a reward for taking part. Coach them on making life-style changes that will help them avoid dementia.
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 »
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.
Identify blogs and social media sites with existing large memberships of Alzheimer's caregivers. Sites with opt in email lists are likely to be the most effective. Partner with them for specific trials and have them share information with readers; or, use links to a specific clinical trial pre-screener.
After identifying a study candidate, we must encourage POA, family members and long time friends first to allow the patient to participate and also design the study in a way that that not only encourages family and friends to participate but requires their participation to gather accurate data and possibly data from different points of view. That point of view being family members and friends that may be better suited ...more »
Thanks for seeking out this input. My recommendation is simple: The ability to more effectively recruit people to clinical trials aimed as cure rely heavily on being honest with the public about the actual empirically-based likelihood of curing Alzheimer's disease and other forms of dementia. I recently published an article about this problem. You can see the citation and link to the full-text article here: Caspi, ...more »