Providing Answers, Support and Hope in Texas
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.
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: August 8, 2025
Researchers from Queen’s University in Canada are seeking volunteers to participate in a study to better understand how certain factors — including where pain is felt, thoughts and feelings about pain, confidence in managing one’s health, and the support received from friends, family, and significant others — impact the connection between pain and depressive symptoms in people living with systemic lupus erythematosus (SLE). Participants will be asked to complete a brief online survey about their experiences with pain, emotional health, and support systems. Your participation will help researchers better understand how these factors may influence mental health and could guide the development of future resources to help people with lupus manage pain and improve overall well-being.
Participant Eligibility:
- Aged 18 years or older.
- Diagnosed with Systemic Lupus Erythematosus (SLE)
- Must speak, read, and write English (USA/Canada) language
- Must have access to an electronic device (e.g. Smart phone, Tablet, Computer) to access online survey.
If you are eligible, you can access the survey here.
For more information regarding this study, please contact Anmol Taggar at painlab@queensu.ca.
Study’s end recruitment date: August 20, 2025
Researchers from Duke University are seeking volunteers to participate in a study to evaluate the feasibility and acceptability of using wearable digital health technology for continuous monitoring of physiological, sleep, and physical activity data in adolescents with chronic musculoskeletal pain. This research aims to develop objective digital endpoints of the pain experience to improve diagnosis, prevention, and treatment outcomes.
Participant Eligibility:
- Aged 14-24 years old
- Diagnosed with chronic widespread pain or chronic primary musculoskeletal pain (other than orofacial)
- Located in the United States
- Able to read and understand English (USA) language
- Must have internet access
Compensation: Up to $210 available to participant upon completion of study.
For more information regarding this study, please visit bpp.stanford.edu/trac-pain/ or contact Ms. Sahrish Masood at sahrishm@stanford.edu.
Study’s end recruitment date: November 30, 2026
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.