Skip to main content
Close

Participate in Investigator-Initiated Studies

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.

Research Study Opportunities

SLE and COVID-19 Vaccine Antibody study

Researchers at Johns Hopkins are enrolling people with SLE in a study to determine COVID-19 antibody levels in those who have received or plan to receive the COVID-19 vaccine. Participants will receive their antibody results. The study does not provide the vaccine, and study team members will not be offering guidance as to whether one should or should not receive the COVID-19 vaccine. Participating in the study includes completing surveys and getting multiple blood draws to track antibody development. Access the study here. Please email vaccineresponse@jhmi.edu for more information regarding this study.

Lupus and COVID-19 Vaccine Research study

A research team led by Dr Rebecca Sadun (Duke University) is conducting a study into how individuals with lupus feel about the COVID-19 vaccine. Participation involves completing a 10-15 minute online survey about your thoughts on the COVID-19 vaccine and whether you have gotten or plan to get the vaccine. Get further information and access the survey here.

Factors Influencing Absenteeism and Employment Status among People Diagnosed with Systemic Lupus Erythematosus (SLE)

A research study, led by Professor Anne Miles at Birkbeck College, University of London, is being conducted to examine the factors influencing absenteeism and employment status among people diagnosed with Systemic Lupus Erythematosus. If you meet the criteria below, we are asking that you consider participating in a voluntary, anonymous survey which will take approximately 30 minutes to complete. To access the survey directly, please click here. For more information regarding this study, please email tveniamin@hotmail.com.

Participant Eligibility:

  • Diagnosed with SLE
  • 18 or over
  • Please note: You do not need to be in paid employment to take part

Study’s end Recruitment date is: 9/30/2022

Booster Effects with Autoimmune Treatments in Patients with Poor Response to Initial COVID-19 Vaccine

A new NIH-sponsored multi-location clinical trial will evaluate the benefit of additional COVID-19 vaccine doses in both adult autoimmune disease patients (SLE, RA, MS, SSc and Pemphigus) and pediatric autoimmune disease patients (SLE, JIA, JDM, and POMS) who are on immunosuppressive medications and had an adverse response to initial or booster COVID-19 vaccination. 

Eligible Participants:

  • Must be taking 1 of the following medications: mycophenolate mofetil or mycophenolic acid, methotrexate, or b-cell depletion therapies.  
  • Must be willing to receive an additional COVID-19 vaccine dose.

Participants will be followed carefully for up to 48 weeks to monitor any effects the vaccination may have on disease activity. 

For more information regarding this study, contact Kate York, kate_york@rhoworld.com, or visit www.autoimmunecovidbooster.org

Study’s end recruitment date is: June 2024.
 

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.