Visit to UC Irvine to participate in a natural history study of IBM
I heard about a study gathering information about those with IBM at the San Diego conference this year called INSPIRE-IBM. I also heard about a drug test for IBM. I signed up for both. The drug test has a waiting list of hundreds of individuals, but the INSPIRE study had 2 openings left, and I was asked to send medical information to see if I qualify. When I got all those records coordinated and sent several weeks later, I was asked to come for an appointment to measure my baseline, which could also disqualify me if they found things I did not yet know about.
I went on the website Participants Needed for IBM Study - Cure IBM and the following is what I found with my responses to each question after.
What is the INSPIRE-IBM Study and Why is it Important?
First of all, it is a natural history study, which means that it gathers information about patients and observes how the patients change as time passes. The purpose of the study is to learn more about IBM, how it affects the body, how it progresses, and how the progression can be measured. Participants will not be receiving any new treatments for IBM, but that doesn’t mean that the study is less valuable than a clinical drug trial. Natural history studies are extremely important for rare diseases.
The study hopes to answer critical questions, which I’ve listed below with some comments about my experiences so far with the study, in addition to what they hope to achieve with the study.
“How quickly does IBM progress? Can people with slow or fast progression be predicted based on their characteristics at the beginning of the study?”
To this end, participants responded to a comprehensive questionnaire, asking about any medical events in the last ten years, what my symptoms have been and when I noticed them, and any surgeries I could recall throughout my whole life.
“Which physical tests are the most sensitive and reliable for detecting changes in muscle strength and function?”
To work on this question, a Physician's Assistant performed various muscle tests to see how much pressure it took to keep me from holding different positions with arms and legs.
“Do people who test positive for the NT5c1A antibody have different characteristics than those who have a negative test? Is their progression faster?”
For this they took a lot of blood samples. Some were for other parts of the study information. I asked them if they were going to leave me any blood and they laughed. I received the results of these studies via a UCI portal to view my medical record.
“Can the study identify IBM biomarkers, tests that could be used to reliably measure the progression of inclusion body myositis?”
The Myositis Association has a worksheet to help suss out progression of the disease. It is based on scores for which things you need help with and which you can do on your own. For instance, do you need help to dress? Or bathe? Or assistance with walking? The Physician’s Assistant on the INSPIRE team asks these same questions from the baseline visit at each of 4 other visits which are 6 months apart. This will require 4 more trips to Irvine. They also do blood testing and physical testing the same as for the baseline visit.
“Answering these questions will not only increase our general knowledge about IBM, but will also help drug companies who might sponsor a future clinical drug trial for IBM.”
I was told that at the 1 year mark, I would be asked if I was willing to do a biopsy and compare it to the one taken when I was diagnosed. I don’t have to decide until then, but I will probably do it. It will tell me something as well. I know this study will not help me with the progression of the disease, but it will help me understand how I am progressing. The idea is to help others who get this disease in upcoming years.
My friend and I decided to have a little fun while I participated in this testing, so we stayed in Huntington Beach (only 30 minutes from the research site) and got a waterfront hotel. The view was amazing.
The first day we were there was a travel day and we were investigating the town around our hotel. The second day was the research study. But, we stayed one extra day and day 3 was for fun. We found an art show on the pier, we ate at lots of fun places (too much most days) and we went to a night street fair. Then we fell into bed because the next day was traveling again.
Having my friend with me made the traveling easier, too, and there were no near-falls or frustrations. Not that this will have my daughters and husband certain that I can travel by myself. In fact, one daughter promised to take time off of work and go with me in June 2024. I’m looking forward to it already.
“All we have to decide is what to do with the time that is given us.”
This blog post is based on personal experiences and is not meant to provide medical advice.
Always consult your healthcare professional for personalized guidance on your health journey.
