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.
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.
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.
Additionally, this might reduce the burden on the caregiver to take care of errands/housework... more »
- 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 »
the sale of drugs... more »