An Often-overlooked Way to Participate in Clinical Research

March 13, 2020 Darcy Grabenstein

This week, amid increasing concerns about the COVID-19 pandemic, I donated blood. As the technician proceeded with the standard prep phases – taking my temperature and blood pressure, checking my iron level and, in addition to the usual screening questions, asking about any recent travel outside the US – I asked if she had seen a decrease in donations due to COVID-19. She responded that she hadn’t noticed a significant drop-off in donations.

However, her experience does not reflect the stark reality in other parts of the country. In Sacramento, for example, five blood drives were canceled, causing a precipitous drop in donations. Seattle, which has nearly 500 reported cases of COVID-19, is reporting a blood shortage.

The fact is that donating – and receiving – blood still remains safe. Regulated by the Food and Drug Administration (FDA), blood centers must follow stringent guidelines. According to a U.S. News & World Report article, the Red Cross says there is no evidence that the new coronavirus is transmissible by blood transfusion.

Because I give blood on a regular basis, I typically disregard the information-laden pamphlet that is sent home with me. This time, however, the following headline caught my eye: “Possible Use of Donor Information and Blood Samples in Medical Research.”

I continued to read: “… the American Red Cross may conduct research. Some research is conducted with other institutions, such as academic centers and biomedical companies. … How might your blood or information be used in medical research?

“A portion of your blood or information collected at the time of donation may be used to make research studies possible. Some examples of the types of research are

  • Studies relating to testing, storing, collecting, and processing blood
  • Studies of new methods to test blood for infectious diseases
  • Studies of ways to recruit blood donors and evaluate donor eligibility.”

Of particular interest to me, given our focus on clinical trial transparency at TrialScope, was the following: “How might your sample be tested and will you be informed of results?

  • Samples linked to your identifying information may be used for infectious disease testing to provide a safe blood supply.
  • You will be notified in person, by phone, or by letter, about any test results that are identified to you and that may impact your health.
  • If your test results are unexpected, Red Cross staff may contact you by phone or letter and ask you to participate in a voluntary follow-up.”

While my main goal when donating blood is to immediately help someone in need, I must say I’m almost hoping that my blood will be used in a future study. And, not that I would want a negative result, but I certainly would be interested to see whether I actually received any notification.

I’m not alone in my opinion. According to the 2019 Perceptions & Insights Study by the Center for Information and Study on Clinical Research Participation (CISCRP), 85 percent of respondents say it’s somewhat or very important to receive a summary on the results of a clinical research study. Unfortunately, 61 percent of clinical trial participants did not receive any reports or updates on results after the study.

So what are my takeaways here? First, give blood. Don’t let unfounded fears keep you from helping others, particularly in a time of need.

Second, I implore any organization conducting clinical research to share study results with participants – and with the public at large. It’s the right thing to do.

For an example of a portal that hosts study summaries, check out TrialSummaries.com.

About the Author

Darcy Grabenstein is Senior Manager of Content Marketing Strategy at TrialScope. With a background in journalism and public relations, she has 30-plus years of experience in communications.

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