We need your ideas to optimize participation in Alzheimer's clinical trials and studies!

As research expands and accelerates to meet the national goal of preventing and effectively treating Alzheimer's disease by 2025, the need for research participants is reaching a critical point. Recruiting and retaining diverse populations of volunteers in a wide array of studies has become a leading challenge in our progress toward a cure. To address this need, over the past year, a group of stakeholders in the Alzheimer's research community, led by the National Institute on Aging with facilitation by the Alzheimer's Association, has been exploring the question of how we can expand and diversify participation in Alzheimer's and related dementias clinical studies. We aim to develop a national strategy to guide and align the efforts of the many organizations engaged in this work.

Now, we are seeking ideas from the wider community - advocates, clinicians, people with dementia, family members, caregivers, researchers, and site coordinators - about how to overcome barriers and optimize participation in Alzheimer's research. Please let us hear from you!

We are looking for ideas on the following topics. Click the links to learn more:

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To submit an idea, please register and click the Submit New Idea button at the top of the navigation sidebar. You will then be asked to add a title and choose a category for the new idea. You will also have the option to add tags to the idea. To vote on an idea, simply click the up or down arrows to the right of the idea title/description. And to add a comment, click in the box below the idea.

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Raising Awareness

Awareness Campaign (Brain Health) - Celebrity Endorsement

Raise awareness on the importance of brain health through celebrity driven awareness campaigns. Much like the Selena Gomez campaign on Lupus nephritiis, institute a celebrity driven campaign for AD targeted towards the 50+ population

Submitted by (@vraghavan)

What problem does your idea solve?:

Lack of awareness on the importance of brain health, and pro-activeness among 50+ population to maintain their brain health

Voting

1 vote

Raising Awareness

Online Registry Advertisements

For patients and physicians who register with an online patient registry, the registry should automatically send weekly updates on new trials open close to the zip code of the patient or the physician so that the stakeholder can be informed of new trials through a more passive approach

Submitted by (@vraghavan)

What problem does your idea solve?:

Lack of awareness of locally active clinical trials

Voting

1 vote

Optimizing Clinical Studies Recruitment

Specialists bring up clinical trials in a conversation during a visit

Build guidelines for referral of patients to clinical trials / educate specialists to think about AD clinical trials as an attractive treatment option for their patients. If this is well instituted, physicians will bring up clinical trial participation in conversation during visits, which would spark a conversation gauging the interest of a patient to participate in a CT.

Submitted by (@vraghavan)

What problem does your idea solve?:

Low referral rates of patients from specialist clinics

Voting

2 votes

Building Relationships with Local Communities

Monetary Incentives (Specialist)

Provide monetary incentives to neurologists and specialists who refer patients to a clinical trial. If sponsors monetarily incentivize neurologists, and get the word out to community specialists near trial sites conducting AD trials, to increase trial referrals from their practice, thereby fastening recruitment.

Submitted by (@vraghavan)

What problem does your idea solve?:

Low referral rates of patients from specialist practices

Voting

1 vote

Optimizing Clinical Studies Recruitment

Effective Trial Design - historical control use / everyone gets the drug

Given that there have been over 20 phase 3 disease modifying trials in the past / open currently, we should encourage sponsors to start using pooled data from their historical controls in Phase III trials so that all patients in the next generation of AD trials have access to the investigational drug. If all participants receive the drug, there would be less barriers caused by patients feeling that they may be wasting ...more »

Submitted by (@vraghavan)

What problem does your idea solve?:

Potential that a patient may get a placebo for the time they invest in a clinical trial.

Voting

1 vote

Raising Awareness

Feature a Celebrity Participant

Recruit a celebrity to complete a Trial Match Profile and use a slogan of "I Did It - You Can Too!" This will create interest and especially drive home the point that you do NOT have to have Alzheimer's or be of a certain age in order to participate in Trial Match

Submitted by

What problem does your idea solve?:

It solves one of the most common problems we face: the assumption that you have to have Alzheimer's to be in a study or trial.

Voting

6 votes

Optimizing Clinical Studies Recruitment

Design the study so it involves home visits

We conducted a focus group about clinical trial participation, and those attending talked about the difficulty of getting their loved one with AD into the car to travel to the doctor. Could some clinical trials be designed to use a home visit method? I think this would remove a very big barrier to people whose AD is more advanced.

Submitted by (@tetra.julie)

What problem does your idea solve?:

Increasing participation rates of people affected by Alzheimer's disease.

Voting

2 votes

Optimizing Clinical Studies Recruitment

Runners Health

I am a runner and would like to see more information in our pre-race events about Alzheimer's. Runners take care of themselves physically. Adding to this base knowledge and understanding the health of the brain makes for better health. I am also an employee of Banner Alzheimer's Institute and I read the book "Still Alice". Alice, a highly intelligent women and a runner, was diagnosed with early onset of Alzheimer's ...more »

Submitted by (@olga.torres)

What problem does your idea solve?:

Most of the time concerns are addressed after a diagnosis. Perhaps having preventive measures through outreach may create awareness leading to pre-testing.

Voting

2 votes

Optimizing Clinical Studies Recruitment

Modified mmse for those with low scores and/or aphasia

My husband often could not answer questions during oral mmse testing but if given the question orally and the answer in written multiple choice format, he scored considerably better, (e.g. if asked in what city do you live and given a list of 20 cities, he could either point to or say the correct answer). As the dementia progressed, using this format would allow further testing using mmse and potentially further participation ...more »

Submitted by

What problem does your idea solve?:

Using a modified mmse allows those previously not accepted into trials (because of a low mmse score) to participate.

Voting

2 votes