The news does give me hope. Although my DH has been diagnosed for 5 years, I have been on the AD road since my early twenties and DH has been all his life as he saw many of his relatives dying of AD. I don't know why it is so hard to get researchers, pharmaceutical companies and the FDA all on the same page. I think like they did with HIV drugs, they should make more exceptions and accelerate the clinical studies.
I would welcome ideas on how to affect this process.
For those who have the genes APP, PSN1, PSN2 for early onset AD. See the below link for the research centers recruiting for this joint international study. I pasted the first paragraph of the article.
http://www.nih.gov/news/health/nov2008/nia-19.htm
Study to Examine Early, Inherited Form of Alzheimer's NIH Funds International Network in Search of Biological Clues
"The adult children of people diagnosed with inherited Alzheimer's disease are the focus of a new study to better understand the biology of the disease. Researchers are seeking 300 volunteers with a biological parent with a known genetic mutation causing rare and typically early-onset forms of the disorder to join the Dominantly Inherited Alzheimer's Disease Network (DIAN) study, a six-year, $16 million study funded by the National Institute on Aging (NIA), part of the National Institutes of Health (NIH). The scientists hope to identify the sequence of brain changes in early-onset Alzheimer's, even before symptoms appear, and by understanding this process, to also gain insight into the more common late-onset form of the disease."
Three of my husband's siblings died from EOAD. Thank God that there is some focus on EOAD. Ralph had no children of his own (he helped me raise mine), but he was so concerned about this nephews and nieces.
Darlene, I know the stress can be huge for families with EOAD. Researchers have learned alot about AD from those with EOAD but EOAD people have been excluded from clinical drug trials because they are too young. Hopefully thru this DIAN collaboration, those with EOAD will have access to experimental drugs. Also it can be very empowering to contribute to research. It can give a person a sense of hope for the future and give purpose to this diffcult journey.
Lizbeth, a lot of clinical trials are accepting patients as young as 50 nowadays.
The DIAN collaboration sounds more like it's targeted at diagnostics -- understanding which mutations cause eFAD and developing the tests to detect and identify them.
HOWEVER ... DIAN could be a great way to get a diagnosis, if your spouse's doctors are reluctant to diagnose younger patients as having AD !
Sunshyne, When I say young, I mean thirties even twenties. Families with PSN1 are seeing noticeable symptoms at this age. So this is addressed at those families who know they have the specific genetic mutations of APP, PSN1 and PSN2 with young onset in their 20's, 30's 40's. There aren't very many of them but I want to encourage them to get involved in the research if they can. The reason the clinical trials are now accepting patients as young as 50 now is because of pressure from these EOAD families and the researchers who were meeting them. By 50 alot of these patients are dead or very far gone.
If you have these genes in your family, you probably have a very good idea. To be in this study you will have to have a genetic test. The reason for DIAN is to pool resources as well as these subjects. Everyone with AD benefits from this research. With these eFAd subjects, researchers know the type of dementia they are dealing with is AD. The way it progresses is similar in the specific families. They often time have done brain autopsies on prior generations and may have MRI's, PET scans from their parents. Therefore, they can pinpoint brain changes and look for markers that also are present in the general AD population. This can help not only in early dx for the general population but also in the development of preventative drugs.
I have already called & recieved the consent forms. In addition to those are already in their data bases they are searching for more families for enrollment. The good news is you can be participating in other trials and not be excluded. I have already talked to our Elan study doctor to see if they had any concerns about my husband enrolling in both. We will be bring in the consent form when my husband get his next infusion for them to review.
Ironically most of the current AD drugs in trials were developed from the three genetic mutations PS1, PS2 & APP. It is so sad when someone in their 30-40's are excluded from participating. A few years ago I tried to get my husband in the Flurizan trial but was told he was to young at 52. I asked our college son to get his dad a fake ID : ) ! A few months later I read a statement from their phase II results admitting that they thought it would benifit those with familiar AD. I was so P.O.ed that I called the company and complained how unfair they where being.
Trish, My DH is scheduled to get his first infusion for the Elan study this Wed. I did not even think about bringing the DIAN forms but, now I will.
Also, thanks for calling the company. I know from this site that you and your husband are actively advocating on behalf of everyone with AD and really appreciate it. I never did call and complain to a company. I did talk to Dr. Gandy at an Alz conference a few years ago. At that time my DH's family had been involved in research for more than 30 years but my DH could not get into a drug trial because he was too young. I told the doctor it was so unfair. Another young woman, 31 years old, with the PSN gene, also was desperately begging him push the age limits down. It really breaks your heart. I have been told more than once that it is up to the families and patients to "make a loud noise". I am hoping that DIAN will make a difference.
How many infusions has your husband had? Do you think he is getting the placebo or the active agent?
My husband has had two infusions so far. I honestly can't tell if he is on the drug or placebo. I don't feel there has been a decline since he started the study for which I am thankfull for. He is still in the early stages and is highly functioning. Based on family history my husband should have a slow decline.
Let me know if you have any problems with Elan on participating in both studies. Our doctor seemed to think they may object to the lumbar procedure. The boimarker studies were optional.
Good luck on Wednesday on your husband's first infusion!