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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.

The Relationship Between Women with SLE and Marital Satisfaction study

Recruitment date ends 10/20/2021

Investigators led by Dr. Brian Canfield at Florida Atlantic University are conducting a study exploring the impacts of Systemic Lupus Erythematosus (SLE) on marital satisfaction and partner intimacy in women living with lupus. If you are a heterosexual women, married at least 1 year, and between the ages of 18-65, you may qualify to participate. Participation involves sharing your experiences by completing an online survey. Access the study here.

Please email Miriam Moreno-Duany at mmorenoduany@fau.edu for more information regarding this study. Compensation is available for your time.

Transition Research Prioritization Exercise study

Recruitment date ends 12/1/2021

A research study, co-led by Dr. Joyce Chang at Boston Children’s Hospital, is being conducted to develop and rank research topics related to the transition of youth with pediatric rheumatic diseases to adult health care systems. If you meet the criteria below, we are asking that you consider participating in a voluntary, anonymous survey to rank transition research goals in order of priority and feasibility.

Access the study here.

Participant eligibility: 

  • Young adults (age 18 or over) with a chronic pediatric rheumatic disease 
  • OR a parent/caregiver of a teen or young adult with a chronic pediatric rheumatic disease
  • OR a health care provider or other allied health professional who cares for children or young adults with pediatric rheumatic diseases
  • OR other members of rheumatology-related patient-advocacy groups and health organizations (Lupus Foundation of America, Arthritis Foundation, CARRA)

Periods, Birth Control, and Kidney Disease Survey

Recruitment date ends 1/4/2022

A research study, led by Dr Sofia Ahmed at University of Calgary, is being conducted to describe periods and birth control use among females with kidney disease worldwide. If you meet the criteria below, we are asking that you consider participating in a voluntary, 5-15-minute online survey. 

Access the study here.

Participant eligibility: 

  • Participants born with a uterus
  • Age 18-50
  • Chronic kidney disease diagnosis (any stage)

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.