Monday, June 21, 2010

ICARA Global Phase III Study

ICARA (Investigational Clinical Amyloid Research in Alzheimer’s) is conducting a global study on a drug called bapineuzumab which may slow the progression of Alzheimer’s. Trials will be conducted in more than 20 countries, including the United States.

Unlike many studies which exclude those with early onset Alzheimer’s, eligibility for the Bapi study starts at age 50. An online prescreening questionnaire is available to help you determine if you, or your family member, meet the other requirements for the study.

Whether you enter into a drug study has a lot to do with your personality. They are not for everyone. It may be ideal for you if you are the type of person who understands the study drug may not help you, and could cause undetermined side effects.

When Jim was in the early stages of Alzheimer’s we made the decision to enter him in a Phase III drug study. My sons helped me make the decision, because Jim had trouble communicating and I wasn’t sure that he understood the possibilities or the downside. They both agreed that since all the drugs available only treated symptoms, their dad would not want to bypass a chance to participate. As the primary caregiver I felt it was my responsibility to vet how a drug study works.

The upside to a drug study is you have the support of a medical team, laboratory services and testing without any cost. For those who are struggling with the costs of testing or expensive treatments, this is a big incentive.

Through the drug study Jim participated in, we found a neurologist who was considered the top in his field. Jim was given thorough exams, an MRI, and other tests without any charge to us or our insurance company. Jim developed side effects—mostly stomach distress—and had to discontinue the study. We kept the same neurologist who monitored Jim throughout the progression of his dementia. Even after Jim’s death, the neurologist read the brain autopsy report to let me know that Jim had corticobasal degeneration and not Alzheimer’s.

Many people participate in drug trials not particularly for their own benefit, but to be a part of the investigative process to help people who have not yet developed the disease. Effective treatment for Alzheimer’s is the key to preventing a national crisis as the baby boomers age.

The study drug, bapineuzumab, is not a cure for Alzheimer’s, but slowing the progression of the disease can ease the emotional and financial burden of Alzheimer’s. What are some of the benefits from slowing the progression of Alzheimer’s?

• People would remain in the mild stages longer.
• People with dementia could remain in their home longer before requiring long term care.
• Fewer people would be in the severe stages.

In the early stages, our greatest hope was to stop whatever was affecting Jim’s cognitive ability. As we worked through eliminating other treatable disorders, we often said, “If he doesn’t get any worse, we can deal with this.” Jim had changed, but he could still play his guitar, enjoy his grandchildren, and could have continued on with a productive, happy life.

When the world was faced with an AIDS crisis, research made it possible for some people to live with HIV and never develop AIDS. Why is it beyond the realm of possibility that a drug may someday be available to slow the progression of Alzheimer’s so that our loved ones would never move into the late stages of Alzheimer’s? This drug does not promise to be a cure, but it is a step in the right direction.

Call 1-888-770-6366 or visit www.icarastudy.com for more information about the ICARA study.

copyright(c)June 2010 L.S. Fisher
http://earlyonset.blogspot.com

3 comments:

Carol Noren Johnson said...

Thanks, Linda. Will look into it.

Ashley Burden, Alzheimer's Association Mid-Missouri Chapter said...

Great advice, Linda. Participating in research studies may not necessarily benefit your family today, but you could be contributing to research that will benefit every generation to follow.

Karen said...

This has been my BIGGEST pet peeve for years. AIDS deaths decline drastically, because they raised their voices and money was raised for research. Alzheimer's patients do not have those voices, that's why we need to continue to fight for them. The medical community needs money to make that happen. We all need to demand more be done for research!!
Thanks Linda.