Tuesday, August 9, 2011

DIAN

This is the study I will be doing, that our family has been apart of for some time.  I do not have a date set, but I have heard from the University and they have received my paperwork. 


DIAN - A study opportunity for families with inherited early-onset AD The Dominantly Inherited
Alzheimer's Network (DIAN) study has been established by the National Institute on Aging of the National Institutes of Health (US) to bring together researchers who study genetic forms of Alzheimer's disease (AD). The DIAN research volunteers are members of families in which AD is dominantly inherited, meaning that about 50% of the individuals in each generation of a family develop AD, generally before age 60. These rare forms of AD are caused by a mutation in one of 3 genes. Each child of an affected parent has a 50% chance of inheriting the mutation. If they do, they will likely develop the dementia of AD at about the same age as their parent. Siblings who do not have the mutation have no greater risk of developing AD than someone without a family history of AD and will participate in DIAN as part of a comparison group for their mutation-carrying siblings. Individuals participating in DIAN are not required to know whether or not they carry a mutation. Should participants wish to learn their mutation status through genetic testing following genetic counseling, DIAN can assist with this process.
Research suggests that brain changes may occur years before actual Alzheimer's symptoms are detected. The major goal of DIAN is to study these changes in people who carry an AD mutation in order to determine how the disease process develops before there are any symptoms. Ultimately, knowledge gained from DIAN may lead to tests that detect people who still are normal but are at very high risk of developing dementia caused by AD. All DIAN participants will be members of families with dominantly inherited AD caused by a known mutation and may be ideal candidates to participate in possible future studies of drugs that may have the potential to halt the AD process and prevent dementia.
People from families with a known mutation causing AD are eligible to participate in DIAN and its studies of physical and mental changes that may predict future AD. These studies include:
• clinical interviews
• mental status testing
• brain scans, including magnetic resonance
imaging (MRI) and
positron emission tomography (PET)
• blood assays, including genetic studies
• assays of cerebrospinal fluid (CSF),
obtained by lumbar puncture (spinal
tap)
Presently, there are 10 DIAN study sites: 6 in the US, 1 in the United Kingdom, and 3 in Australia. Research volunteers travel to one of the sites for the studies, which are repeated every few years. It is expected that each round of DIAN studies will take about three days to complete. All DIAN assessments are for research purposes and are supported
by DIAN. Reasonable costs of travel to a study site, accommodations and meals
during study participation may also be covered by DIAN. Volunteers may receive payment for some study procedures; whether payment is offered and the amount will be determined by the
individual study site. DIAN participants need to:
• have a biological parent or sibling
with AD caused by a known mutation
• be at least 18 years of age
• speak and read English
• have someone who knows them well
and is willing to answer questions
about their memory and thinking.
Eligible individuals who volunteer to enroll in DIAN will contribute to this unique international effort to discover the basic causes of AD. At the same time, they must be highly committed,
because DIAN asks much from these volunteers in terms of time and testing.
It is anticipated that the improved understanding of the AD process will result in better tests to detect AD and eventually lead to therapies to treat or even prevent the illness. However, there
can be no guarantees of success in these areas, and almost certainly not within the next few years. DIAN volunteers who donate their valuable time to DIAN may not directly benefit themselves but hopefully will greatly help their children and grandchildren.
More information about DIAN can be
found at www.dian-info.org or by calling
the DIAN Global Coordinator at (314)
286-2683.

4 comments:

  1. Sheryl,

    Good for you for participating! Is the study based out of St. Louis? I noticed the 314 area code.

    Linda Fisher

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  2. Yes, The study is being led by John C. Morris, M.D., director of the Alzheimer's Disease Research Center at Washington University School of Medicine in St. Louis. Some younger family members have done this study already. There are several research collaborators across the US, and I believe I will be going to Indiana. Although, I may need to check this out because St. Louis would be a whole lot closer. I just realized this by your comment. Thank you! =)

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  3. Sheryl, I am so glad you have choosen to participate in this and I will be keeping you in my prayers. I am here for you if you ever need anything. Love you, Becky

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  4. Karla DeMoe HornsteinAugust 22, 2011 at 10:21 AM

    I am so proud of you Sheryl! You are doing a very wonderful thing and knowing that you are giving of yourself for research is awesome. It will give you the hope that we all need in order to endure what lies ahead.

    I think all of your stories are amazing and I know there were extremely hard for you to write. I believe it will be a healing for you that you need. Everybody deals with life's struggles differently, but we do the best we can at the time. No regrets, just move forward one day at a time.

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