
Being a Research Participant

Stay Informed
Our current projects examine the relationship between the hormonal fluctuation during the menstrual cycle and the sickle cell pain experience. This may explain the difference between the frequency and severity of pain episodes seen between male and female patients with SCD.
Every research study has a set of criteria to determine if a someone is eligible to participate in a study. We streamline the process by asking interested people to fill out a 'pre-screening survey', which helps us understand if you broadly meet the criteria of a study. A study coordinator will reach out to you to discuss the study details and go over other considerations, such as needing transportation to the study visits.
There is no obligation to participate in any research study, even if you fill out a survey and are deemed eligible.
Sometimes!
We are so grateful to the male participants with SCD. Our research question regarding hormonal fluctuations and the menstrual cycle would be unanswerable without a comparison group (participants with SCD who do not menstruate).
There are risks and benefits to taking hormones. Concern about the clotting risks associated with hormonal contraception has resulted in a tendency for clinicians to avoid prescribing any hormonal contraception to their patients with SCD.
Non-estrogen hormonal contraception, such as the Depo shot, has a much lower clotting risk than estrogen-containing contraception. That being said, there is no way to predict the side effects that an individual may experience when taking hormones (or any medication).
Before receiving any medication in a research study, study doctor reviews the participant's medical history to make sure there are no factors which might increase the risks of a medication.
The FDA added risk of meningiomas, a type of tumor (usually benign), to the official labeling of Depo in December, 2025.
There have been two large studies looking at the relationship between Depo and meningiomas:
A 2024 study from France found that there were more cases of meningiomas in patients who had used Depo for more than a year compared to patients who had never used Depo. *Of the 18,000 people who had experienced meningiomas, only 9 had used the type of Depo used in the United States.
A 2025 study, which looked at the US population, found a higher prevalence of meningioma in patients who had used Depo compared to patients who no hormonal contraception, or other types of hormonal contraception. *The study included 88,000 patients who used Depo, of which 154 had been affected by meningiomas. Risks of meningioma with Depo seemed related to prolonged use (4 or more years), and age at initiation (starting Depo at age 31 or after).
The research findings in both studies were statistically significant. Statistical significance indicates that the results are unlikely to have occurred randomly. However, meningioma rates among Depo users are not high enough to determine causality.
If you are interested in our Depo study, the team will review potential risks and potential benefits of the medication and study procedures.
Read more: AJOG
Women's Health Clinical Research Center and the University of Pennsylvania have a lot of research studies which you may be eligible for. If Sickle Cell Disease is your specific area of interest, you should sign up for our Sickle Cell Science Advocate mailing list.
Thinking about participating in one of our many studies here at the Center? Here's some important information that may help you decide: