Hello, my name is Saad Usmani. I'm the chief of the myeloma service at Memorial Sloan Kettering Cancer Center. And I had the privilege of, presenting, the Ash research collaborative project called the Cosmic Study. Let me tell you a little bit about the Ash Research Collaborative. It was an effort that was started a few years ago.
First in sickle cell disease to, further the research at Ash as a research platform and create a network of institutions that work together, to improve the lives of sickle cell disease patients. Do both clinical, research as well as, use that platform for advocacy, purposes as well.
And, then ash decided that we want to do, some work in hematologic malignancies and myeloma was a good example. And they had requested Doctor Ken Anderson to kind of, initiate that. And, and that's how I got involved, in that whole process. So we are a network of 12 institutions. We are putting together, data on over 20,000 patients from our respective institutions.
And eventually we do want community, sites that, have research capabilities to contribute this data as well. And we’ll be able to, do important clinical research studies from that data set, asking questions about what is the real world evidence, of efficacy of different treatments. What is the safety profile? One of the things that we've seen over the last 3 or 4 years is, different groups are putting out collective data, but it's still a few hundred patients here or there.
No one is looking at thousands of patients and looking at these patterns in more detail. So that's that's one part of it. The second is to try to do decentralized trials and bring the, you know, quality of life kind of studies, to the patients homes. And that's the cosmic study. We looked at Covid 19 vaccination outcome and then post-vaccination outcomes for myeloma patients.
And this was a proof of concept study. Where we enrolled 200 patients from eight sites. The idea was to enroll these patients within six months or for up to six months. And we got there around, you know, four months. So it it, you know, it actually enrolled very rapidly. And patients just go to the web portal themselves, sign up and just fill out the questionnaires, serially and, and we're finding very high rates of Covid 19 vaccination already.
And when patients do have infections, it appears that their quality of life is not as affected. And, you know, it's good to actually see myeloma patients having a good score on the quality of life. So we just reported the early data, with it. But, you know, it's a proof of concept. And it just paves the way for future studies like this.
HealthTree • December 18, 2024