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

Submitted by (@kim.g.cvh)

TrialPool - carpooling for participants

To ease the transportation burden on patients, perhaps a carpooling system could be devised to pick people up within local communities and provide transport to sites. The social interaction and support + accountability of showing up for a pre-scheduled ride might help improve engagement, retention, and interest in signing up for a study. Additionally, this might reduce the burden on the caregiver to take care of errands/housework ...more »

Voting

5 votes

Optimizing Clinical Studies Recruitment

Submitted by (@kim.g.cvh)

Yelp for Trials

For people curious about what a trial is like, something offering peer reviews of the experience would be great. It could enable: - Easy ways for participants to provide feedback on their experience and how it could be enhanced - Forums for participants to speak to each other and share tips and tricks about how to navigate difficulties (e.g., navigating logistics of getting to the site) - Transparent reviews of the trial ...more »

Voting

7 votes

Optimizing Clinical Studies Recruitment

Submitted by

Employ Known Solutions

Require that all known medical solutions to devastating diseases be released to the public. It is my belief, and is the thinking of some of the ethical scientists in the field of medicine, that drug manufacturers are holding solutions off the market so that their profits continue to accrue unabated. If we have a cure, how can the chain of greed continue to benefit all those currently benefiting by the sale of drugs ...more »

Voting

7 votes

Optimizing Clinical Studies Recruitment

Submitted by (@kim.g.cvh)

Peer-to-peer program

To help reduce stigma/concern about enrollment, current clinical trial participants could opt-in to being a peer buddy to a potential participant/caregiver who is thinking about enrolling. They could answer questions/concerns, and if they end up joining the trial they can be an ongoing source of support to stay engaged.

Voting

4 votes

Optimizing Clinical Studies Recruitment

Submitted by (@ronlouie)

FDA: recommend cognitive/functional measures on all new agents; piggy back chemo QOL

Exploit the potential data from subjects who are already in the informed consent process, no matter what disease, for possible "serendipitous" effects of treatments on cognition and function. Over the last five years or so, FDA has approved >50 new agents or indications in cancer treatments. Many cancer studies have Quality of Life assessments built into their followup protocols. FDA, perhaps with foundational funding ...more »

Voting

8 votes

Optimizing Clinical Studies Recruitment

Submitted by

Highlight the right to be represented in studies

It might be important to convey the right individuals in the US have to be represented in studies, especially those funded by tax payer money. If we contribute wih our taxes to the funding of AD research, we might as well participate so that findings apply to us too. This is especially important for minority groups.

Voting

6 votes

Optimizing Clinical Studies Recruitment

Submitted by (@mslovjoy)

Use Clinical Studies Participants in state meetings

Each chapter should have at least one research participant that has not had alz in their family. Use as a poster person and they should lead discussions regarding becoming participant even though they are not prone to get alz. They should explain the important of being in a trial, ie, needing people on both sides of the scale. The posters should be hung in pharmacies and Doctors' offices. The participant should send a ...more »

Voting

6 votes