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Researchers should ask patients to help plan studies

Patients and caregivers have useful advice

Number of ParticipantsN/A
Research GoalImprove Quality of Life
Scientists at the Blood and Marrow Transplant Clinical Trials Network (BMT CTN) wanted to help patients from all racial and income groups. They wanted to know how to reach more patients interested in clinical research. They created a group that included patients, caregivers and researchers. 

The group said researchers should ask for patients’ help in 4 parts of research: 
  • Choosing what to study 
  • Creating easy-to-read consent forms 
  • Talking with grassroots groups of patients 
  • Telling patients about results 

One way researchers can reach patients is through grassroots groups such as NMDP, BMTInfoNet, The Leukemia and Lymphoma Society and sickle cell disease groups. 

Researchers should ask groups and patients about what to study. Some researchers overlook things that patients are interested in, such as long-term quality of life and side effects, including tiredness (fatigue), rapid aging, and unusual weight gain. 

The group also said patients could help with informed consent forms. These legal forms explain the possible harms and benefits of a study. The forms often are very long and hard to understand. Patients prefer forms that are fewer than 5 pages and also want read-aloud or video versions. 

Patients also asked researchers to share info more often: before, during and after a study. They want information written in plain language, not jargon, and also like videos. They also want public, online access to study procedures and forms. 

Finally, patients want researchers to tell grassroots groups about studies that are coming up, as well as results of studies.

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