After completing a clinical trial, whether you are or are not a candidate to continue, be given the trial tests and evaluation to keep in confidence for future trials and research so you can see the progression or decline of the studies
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?
Clinical trial data is widely considered "safe" data and individuals who join a trial may want their identity protected. However, for trials administered through individual doctor's offices or small clinics, the identity of people may be held in office computers. I suggest that a highly secure IT solution for protecting identity at this level be sought.
It can be difficult for a healthy individual to join a trial when their spouse works full time. Not only does the person have to take time from work which they may be very motivated to do, but it is very restrictive to have to have someone who doesn't work full time available to go to every appointment with them.
Many insurance companies will not pay for any medical issues for someone who participated in one or more clinical trials. Right now the insurance company can deny coverage for a health issue they say may be due to participation in clinical trials. This should not be allowed. No one who is brave enough to participate in a clinical trial should have to pay for medical care that would have been covered had they not participated ...more »
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.
Increase the placebo to experimental drug arm ratio in such a way that a larger proportion of patients recieve the investigational compound. This would make the trial a lot more attractive.
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 »
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.
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 »
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 »
When dementia is suspected, the physician has a set of routine questions that he asks and then assigns a score (mmse). The physician needs to convey that this is a standard test routinely given and repeated to determine progression of the dementia. He also needs to state that the score is an important part of the criteria for acceptance into clinical trials (His help in finding a trial would also be appreciated). My ...more »
I know that it can often be difficult for caregivers to get potential study participants in for their study visits. There are a variety of reasons for this, but one of the most common is that the research centers and clinics where studies are being conducted are in inconvenient locations or difficult to get to. I think that study recruitment and participation would be greatly improved if the testing centers were taken ...more »
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 »
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 »
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 »