We survived out first DIAN study.
I was so nervous about going and doing the tests. Not really knowing what to expect, going somewhere new, and doing something out of the ordinary really got my nerves in a bind. But it went smoothly and we are all recuperated now.
It was an intense few days with Psychometric tests, MRI, Lumbar puncture, PET scans, and finally a clinical assessment. All the people that make this study happen were so awesome. They were so helpful with information and making sure we understood the whole process all along the way. They really made the entire experience as easy as possible for us. My sister and I had tests at different times, usually back to back, so we didn't get much sight seeing in but we got to go eat at some really great restaurants.
We got to meet Dr. Bateman, http://neuro.wustl.edu/aboutus/facultybiographies/bateman/ and got to talk with him about the drug trials they are doing. It was an honor to meet him. We also met Dr. Morris at the Knight ADRC http://alzheimer.wustl.edu/. I would recommend reading about both doctors and what they have accomplished and what they are working towards for Alzheimer's.
The progress they have made since my dad was diagnosed has been amazing. They have learned so much and are so dedicated to finding out more. It really gives me hope.
We did not do the genetic testing while we were there, that is something we can do at a local facility. As of now, I am still not doing that test, but my sister is considering it. Any children who have a parent with the confirmed mutated gene that causes dominantly inherited Alzheimer's disease can participate in the drug trials they also offer as part of the study. http://www.alzforum.org/new/detail.asp?id=3289
We go back in three years to do the same tests, but this time I will know what to expect and won't be so nervous. I am happy that we got to do this and so thankful that my sister and I got to do it together.
We are tough girls that can handle anything life throws our way and we believe that someday there will be a cure for Alzheimer's disease.
I want to thank my mom and husband for being there with us encouraging us, supporting us, and loving us every step of the way. I wouldn't want anyone else by my side. I want to also thank the rest of the family and our friends for showing their support and love. It really means a lot!
Showing posts with label DIAN. Show all posts
Showing posts with label DIAN. Show all posts
Friday, July 5, 2013
Wednesday, June 19, 2013
DIAN here we come!!
I know. I know. I keep
saying I’m going to find the time to post.
I am a very busy girl. ;)
Here is a quick update…
So my sister and I didn't go to Pittsburgh like we had
planned. Many circumstances came up and
it was just not going to work. Instead,
we will be going to St. Louis and take part in the DIAN study there. We are leaving this Sunday and will test for
three days. It is such a privilege to be
able to do this, yet a little scary too.
Several of my cousins have done this study and I am very
proud of them for doing so. There are a
bunch of us DeMoes and even though we live so far away we are still doing this
together.
For those of you that aren’t familiar with the DIAN study I
would like to tell you what we are about to do.
DIAN stands for Dominant Inherited Alzheimer Network. It is an international research partnership
of centers, which study a rare form of Alzheimer’s disease that is caused by a
gene mutation. We are doing this study
for doctors and scientists to better understand the genetically mutated form of
Alzheimer’s, which will lead to better tests and treatments. There is no cure, but they have come so far
just in the last 10 years with treatments and medication it is now possible to
slow down the progression of the disease and hopefully with continued research
and development, may eventually even stop it altogether. Because my dad had this mutated gene, my
sister and I both have a 50% chance of carrying the gene. This study will collect data and tissue from
us so researchers can determine what changes occur before and after Alzheimer’s
disease symptoms start.
On Monday we will take a psychometric test then an MRI. Tuesday we will have a lumbar puncture done
then injected with an imaging tracer for the PET scan. I know I will not be able to, but I think it
would be so cool to be able to see what they will see in my brain. I love that kind of stuff. Then on Wednesday we will do another PET
scan with a different type of tracer. Once we are finished with that we will be
coming home.
Oh, one last thought.
If anybody knows of any good restaurants or fun stuff to do in the St.
Louis area, feel free to share them with me.
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.
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.
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