In honor of Myeloma Awareness Month this March, HealthTree Foundation is raising awareness of real-world data research and how the myeloma community can participate in this type of research to promote cures and connect patients with myeloma. Focuses on what can improve the quality of life for that loved one.
What is real-world data?
Dr. Craig Cole, a myeloma specialist at Michigan State University, shares his thoughts on this topic.
Real-world data (RWD) is obtained after a clinical trial is conducted on a certain number of cancer patients. Researchers are interested in whether clinically reported results match what patients experience in the “real world.”
Studies using real-world data are typically retrospective. That is, researchers study data previously collected by the FDA or drug companies. In many cases, the investigators themselves conduct the retrospective investigation. They look back at what happens to patients receiving certain treatments outside of clinical trials. You can also investigate what happens to patients who participate in clinical trials after the trial ends.
How can real-world data help myeloma research?
Actual studies analyze far more people than can be studied in clinical trials. The more people you analyze, the more accurate their data and responses will be when considering responses, outcomes, side effect profiles, etc. There is power in numbers when it comes to understanding real-world data and treatments. Affects the myeloma patient population.
Research may also include rural populations, community clinics, elderly or frail patients, and patients who are unable to participate in clinical trials for any reason. They are not just patients seen at academic centers who live in urban areas with access to transportation (although real-world data is likely to provide a larger subset of these patients as well) . This gives a more accurate representation of the method. All myeloma patients Responding to certain treatments or treatments.
What does it take to conduct a real-world data study in myeloma?
Dr. Jay Hydren, Senior Director of Clinical Research at the HealthTree Foundation, shares that research requires three parts: expertise, patient engagement, and funding. It may be difficult to get all three!
The HealthTree Foundation plans to facilitate 100 real-world data studies with myeloma researchers around the world to accelerate research using the three elements listed above.
- Expertise: HealthTree Foundation invites proposals from myeloma researchers to submit research ideas. We invite myeloma researchers around the world to submit their myeloma research ideas. Myeloma researchers can perform data mining, chart review, synthetic control group comparisons, or research and research on the de-identified data within the system.
- Patient Participation: Our system is comprised of more than 14,000 patient records submitted securely and anonymously to advance myeloma research. These patients agreed to easily connect their medical records and allow researchers to view their data anonymously. We value the privacy and security of each patient and encourage you to connect your records to HealthCure Hub today so we can provide researchers with more accurate data about your actual data and contributions .
- Funding: The HealthTree Foundation plans to raise money in multiple ways to fund this groundbreaking research and advance myeloma treatments.
Action steps for myeloma patients and their loved ones: How to get involved
We encourage you to participate in myeloma research as or on behalf of a myeloma patient by completing one of the following:
- Connect your medical records to HealthTree Cure Hub’s database today. It’s quick and easy, and you can share your records with confidence that your personal information will remain private. All information shared with researchers will be anonymized. We value your privacy and security.
- Stay tuned to our news site during Myeloma Awareness Month in March. Our goal this month is to educate you about research opportunities for you and your doctor. We’ll publish weekly articles with action steps on how to get involved and how you can help others do the same. Please share these with people in your myeloma circle.
- Participate in surveys and research within the HealthTree Cure Hub. This takes her three to five minutes and could impact the way health care providers treat myeloma patients. Join Cure Hub and start getting involved today.
- Ask your doctor if they are interested in submitting a research proposal to the HealthTree Research Hub. The call for proposals will open on March 1, 2024 and close at the end of the same month.
- Please share this article with members of your myeloma circle. The more people learn about and participate in real-world data research, the closer we will get to a cure for myeloma.