Optimizing Clinical Studies Recruitment

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?

Optimizing Clinical Studies Recruitment

Study relatives (children, grandchildren) with genetic markers at earlier age

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.

Voting

109 votes

Optimizing Clinical Studies Recruitment

Explain Trial Clearly

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 »

Voting

53 votes

Optimizing Clinical Studies Recruitment

Provide more study locations or pay for travel

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 »

Voting

126 votes

Optimizing Clinical Studies Recruitment

Education of family to encourage participation of loved ones in studies.

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 »

Voting

19 votes
(@eiloncaspi)

Optimizing Clinical Studies Recruitment

Be honest with the public about the likelihood for cure of Alzheimer's & other dementias

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 »

Voting

16 votes