Providing Answers, Support and Hope in the Southeastern US
What are Investigator-Initiated Studies?
These studies are conducted by individual researchers who have control over the study and its design, as opposed to larger studies conducted by companies or institutions that may have an entire research team. Researchers may or may not be funded to conduct these studies. All studies we share must be certified by an ethics review committee, such as an Institutional Review Board (IRB). We do not share study information without proof of approval.
Project Clio aims to better understand pregnancy-related immune system changes to help make advancements for disease modifying therapies. Participants of this study will give a blood sample before becoming pregnant. Participants who do become pregnant will give more blood samples during the first, second, and third trimester. A final blood sample will be collected during a postpartum visit.
Project Clio stands to provide the greatest assistance to those who are planning to become pregnant and for all people with autoimmune disorders. The findings from the research will help to provide more knowledge on the impact of autoimmune diseases in pregnant individuals.
Participant Eligibility:
- Age 18 years (or older)
- Currently pregnant or planning to become pregnant.
- Diagnosed with non-nephrotic SLE or Multiple Sclerosis
- Located in: Connecticut, Massachusetts, New Hampshire, Vermont, and Rhode Island.
Participants who complete the study will have sequences of their immune cells (B and T cells) made available to them, potentially allowing for future personalized medical treatments. Processed data will be kept in two separate online data systems; one with unidentifiable data which will be publicly available and another with identifiable data which will only be available by study participants.
Participants will receive monetary compensation for participation.
For more information regarding this study, contact Rakiesha Gay at rakiesha@projectclio.org or visit www.projectclio.org.
Study’s end recruitment date is: TBD – Rolling.
Researchers from Ball State University College of Health are seeking volunteers to participate in a study researching the specific symptoms of “brain fog” associated with Systemic Lupus Erythematosus. Study participants will complete a brief online survey regarding language deficits (aphasia) that might occur during moments of “brain fog.” The study seeks information from both individuals diagnosed with SLE and their care partners. The survey should take no more than 15 minutes to complete. Survey responses are kept anonymous, meaning no identifying information, such as names, will appear in any publication or presentation of the data.
Participant Eligibility (Self-report survey):
- Diagnosed with SLE.
- Aged 18 years or older.
- Located: United States of America
Participant Eligibility (Caregiver survey):
- A self-reported care partner or loved one of an individual diagnosed with SLE
- Aged 18 years or older.
- Located: United States of America
For more information regarding this study, please contact Melissa McGrath, PhD, CCC-SLP at Mamcgrath@bsu.edu
Study’s end recruitment date: Rolling/ TBD
Researchers at Baylor College of Medicine are seeking 25 individuals experiencing lupus symptoms who have not yet been diagnosed or are facing challenges in obtaining a diagnosis to participate in a 60-minute interview. The goal of this study is to conduct interviews to gain insight into your experiences and enhance the understanding and prevention of diagnostic errors— instances where health conditions are not accurately or promptly identified. Insights from these interviews will help develop tools tailored to meet the diverse needs of patients, especially those from historically marginalized groups. The findings will support patient-centered strategies to identify, address, and reduce diagnostic errors in healthcare. Compensation is available upon completion of the interview.
Participant Eligibility:
- Black or African-American, Asian, Arab or Middle Eastern Descent.
- Latinx or Hispanic.
- Female, Non-binary, or Transgender.
- Aged 18 years or older.
- Have not been diagnosed with Lupus yet but have symptoms and difficulty receiving diagnosis.
- Located: United States of America
For more information regarding this study, please contact Dr. Sheryl Jefferson at Sheryl.Jefferson@bcm.edu.
Study’s end recruitment date: Rolling; Dependent on when sample size is reached.
Researchers from Capella University are seeking volunteers to participate in a study researching the difference in well-being and body image, between individuals living with Lupus who did and did not receive professional counseling services. Study participants will complete a brief online survey regarding their views about the effects of lupus and/or its treatment on their health, quality of life, and the medical care they receive related to their lupus. The survey should take no more than 20 minutes to complete. Survey responses are anonymous, meaning no identifying information, such as names, will appear in any publication or presentation of the data.
Participant Eligibility:
- Diagnosed with Lupus (for at least 1 year)
- Have or have not participated in individual professional counseling (related to challenges living with Lupus).
- Located in the United States.
- Aged 21 years or older.
For more information regarding this study, please contact Sabrina Henderson, MS, LPC, NCC, shenderson49@capellauniversity.edu.
Study’s end recruitment date: February 8, 2025.
For Researchers
If you are a researcher interested in sharing your study information, please submit inquires with study details, a signed copy of IRB approval on institutional letterhead, and the subject line "Investigator Initiated Studies Posting Request" via e-mail to registrycoordinator@lupus.org. The Lupus Foundation of America reviews and approves all investigator-initiated studies prior to posting on our website.