Interested in participating in research?
AA&MDSIF knows that you are the experts on living with bone marrow failure diseases. We periodically get requests from researchers interested in learning more about life with aplastic anemia, MDS or PNH. While AA&MDSIF will never share your personal information with anyone, we do invite you to reach out to these organizations directly, if you are interested in sharing your experience to help researchers know what it is like to live with a bone marrow failure disease.
Your opinion matters! Share your lived experience to help shape a survey for patients with aplastic anemia.
Analysis Group is developing a questionnaire to understand the lived experience in patients with aplastic anemia, and in particular those patients who have received blood transfusions as supportive care. Your participation will advance the knowledge in this field.
If you answer “Yes” to ALL of the questions below, you may be able to participate in a focus group discussion to share your lived experience and to help shape the survey.
- Have you been diagnosed with aplastic anemia?
- Over the past 2 years, have you had a period of at least 6 months when you required at least monthly transfusions (i.e., a period of time when your health depended upon transfusions)?
- Would you be able to spend one hour in a focus group discussion by telephone to be conducted August-October 2014?
If you participate in the survey development, you will be compensated for your time. To learn more about the study, please contact Dr. Lynn Huynh at Analysis Group in Boston at lhuynh@analysisgroup.com or at (617) 425-8189.
The research is funded by GlaxoSmithKline.