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.