March 27, 2024
Institutional Review Board, Hospital for Special Surgery
The safety of our participants is our top priority. The trial/study is approved and periodically reviewed by the Institutional Review Board (IRB), which includes doctors, administrators, ethicists, and members of the general public. The safety of clinical trials is reviewed by the U.S. Food and Drug Administration.
Before enrolling in a clinical trial or research study, the investigator will explain the purpose of the trial/study, its expected benefits, any possible risks or side effects, and what your role will be. If you want to join the trial/study, you must sign informed consent documents. You can leave a trial/study at any time without penalty.
For further information, see Understanding Clinical Trials/Research Studies.
Jessica K. Gordon, MD
Lindsay S. Lally, MD
David R. Fernandez, MD, PhD
Kimberly Lakin, MD, MS
This study has 55 active patients, and is open and recruiting. Patients are sent questionnaires every 3 months with the goal of understanding the types of issues that patients with scleroderma face to ultimately find ways to develop internet-based interventions to address these issues.
Patients must be over 18 years old and have a diagnosis of systemic sclerosis (scleroderma). Additionally, patients cannot have any disorder that compromises their ability to give informed consent for participation, no access to or not able to respond to questionnaires via the Internet, or no fluency in an available SPIN language (English or French for the initial recruitment).
Mia Diaz
diazmia@hss.edu
212.774.7620