This study is to discover whether genetic factors make certain individials predisposed to developing ALS. It is thought that there may be several genetic factors coming together and producing a vulnerability where environmental influences may interact and produce the disease.
Participation in this study includes one time blood samples from the patient and their living parents. Also, Blood samples from siblings preferably at least as old as when the patient first started having symptoms of ALS.
This is a great study for me because both my parents are living, and I have an older sibling. I would love to know how I ended up with this horrid disease!
The first benefit of this study that made me want to sign up on the spot is to make it possible to diagnose people with a simple blood test. Can you imagine all of the time, tests and stress that will eliminate?
Another great benefit is it will allow researchers to know with a blood sample whether or not you’re benefiting from a drug trial. This will eliminate time wasted, and unnecessary side effects. You can stop treatment immediately, and begin another trial you meet critera for. To me this is great news!
It requires a large donation of blood every 4 months, I make sure to get extra hydrated starting 5 to 7 days before and I haven’t had a problem. It includes a 1 time donation of, I think an extra 7 to 9 vials of blood which I thankfully got out of the way last time. It does also include a sample of spinal fluid every 4 months as well. I’m not about to say a lumbar puncture is painless. For me they’ve been on the fence of real discomfort and downright pain. The doctors performing it are very skilled which definitely makes a difference. When it is hurting I just remind myself of why I’m doing it. It’s not for everyone. Just as another study may not be for me.
The purpose of this study is to identify a group of patients with ALS who are interested in clinical research studies and who may qualify for future trials and to gather data related to disease progression in ALS to maintain a database of information for potential future use. If a future trial requires an observational period before treatment, being in this study may mean that observational period will already be complete and the experimental treatment can proceed without delay. Being in this study does not guarantee anyone that they will be in a future trial.
I chose to participate in this because by nature I always want to be prepared.
The purpose of this study is to see if it is safe to inject special cells into the spinal cord of patients with Amyotrophic Lateral Sclerosis (ALS) and to see how many cells can be injected safely. This is a study many were talking about when I was first diagnosed. This study comes with much risk to myself. It’s something I’ve discussed in depth with my husband well before I was in. The choice was still very easy to make. If we don’t take risks, even serious and possibly life threatening ones, we will never find a cure for ALS. It’s absolutely worth the risk to me and I’m thankful for the opportunity to participate.
More coming soon!