On the 27th of September 2021, I kicked off my 14th year as a research volunteer for the NIH funded Severe Asthma Research Program, aka SARP.
Now in its 20th year and 4th phase, SARP’s intensive characterization study of adults and children with asthma, which is conducted at 7 Universities throughout the country, will continue to collect and share data until at least 2024. Unlike SARP III, which was a longitudinal study for those enrolled in previous years, SARP IV is open to new enrollees as well, including non-asthmatic control subjects.
So what’s new this time around? I can’t speak about the other 7 study centers, as each has a different scientific interest in severe asthma, but in talking with one of the principal investigators at UCSF where I go, they’re looking at a couple key things. They’re interested primarily in learning why people with metabolic disorders (ie diabetes, hypertension, fatty liver, arthritis, etc ), tend to have more severe asthma. They’re also interested in mucus plugs and the role they play in the decline of lung function in those with severe asthma.
As far the actual testing goes, being a patient volunteer on the receiving end of these tests, Id say it wasn’t too bad. Though it did seem to be a little more extensive then last year. Besides the all the lengthy questionnaires, the PFTs, ETCO and exhaled breath condensation tests(EBC), this year they seemed to take a lot more blood samples than last year. I counted 12 vials that they took from me. That, plus a separate finger stick for Covid antibodies. (The Covid blood test and questionnaire are an add-on study that the NI H requires). They’re also collecting both urine and stool samples, a Chest CT scan and an optional optional bronchoscopy for certain people. Not sure Ill get picked for that one. Lastly, the diet questionnaire seems more detailed than last year, though thankfully you can do it online at home.
Here are this year’s Spirometry results. Not the greatest, but at least they haven’t gotten any worse in the past 5 years, so that’s a good thing.
For those who are not familiar with, or have never done maximal reversibility PFTs, the purpose of the test is to see your airways react to a bronchodilator. The test measures how much your lung function improves, if at all, after inhaling Albuterol. The reason it’s done is to make sure you indeed have asthma, and not some other type of lung disease. Since asthma is considered a reversible airway disease, you would expect to see at least a 12% improvement in one’s lung function following the inhalation of Albuterol (assuming that your PFT numbers are low to begin with). The test itself consists of blowing into the spirometer, first with with no albuterol in your system for at least 6 hours, then after 2, 4 and 6 puffs of albuterol spaced apart every 10 minutes. You do this until your FEV1 either maxes out, or doesn’t improve. Most people reach their highest reversibility after 2-4 puffs. The test is harder than it looks, because you have blow out really fast, hard and sustained as long as possible. You could end up doing this up to 20 times depending on how much your PFTs improve, or until you poop out.
Anyways, my FEV1 shot up from 31% to 43%. That’s a greater than 30% improvement after just 6 puffs of Albuterol. While still not great, it’s better than no improvement at all, and that 43% held for almost 4 hours. When I got home it and measured it again, it dropped back down into the mid 30’s, but I needed a treatment anyway, so there you go.
Compared to SARP II and III, participation in SARP IV seems different, but in a good way. More intense, more for focused, more exciting to be involved in. It almost feels like the researchers are on the verge of a major breakthrough or something. As if they’re getting close to discovering how this disease actually works. The thought that I might quite literally be a part of those new findings, is kind of cool too.
Now for my usual cry out for research volunteers…..If you, or someone you know, has severe asthma and lives near one of the SARP sites, I urge to consider participating in the study. Depending on the location, this new 3 year study only requires 1 or 2 in-person visits per year, plus a handful of telephone or video follow up visits. Other than some standard blood draws, and the physical effort required to do the PFT testing, there’s nothing painful or difficult in participating as a volunteer in these studies. There are a couple sub-studies that you might be offered, such as a bronchoscopy, that are invasive, but those tests are totally voluntary and done in the hospital setting. If you want more info on SARP, checkout the website.
Bottom line fellow asthmatics, the more data scientists are able to obtain from people who suffer from the disease, the sooner we’ll find better treatments and maybe one day even find a cure.