Delving Into Participation Trends of Scleroderma Clinical Trials
For patients and families
In plain language
An automatic summary of structured registry data. It is an orientation aid, not a substitute for the official protocol or a physician assessment.
- What is being studied
- This is an observational study: the protocol does not assign a study treatment.
- Who it may be relevant to
- Registry conditions: Scleroderma. Basic parameters: from 18 years · All.
- What needs checking
- Age, condition and sex are only basic indicators. Prior treatment, laboratory values and other mandatory requirements appear in the eligibility criteria below.
- Where it takes place
- United States
- Next step
- Save the trial, show it to the treating physician, and confirm current recruitment with the study center. Costs, documents and travel →
Unsure about the terms? Read our patient guide →
Official title
Deciphering Patient Participation: Insights From Observational Data in Scleroderma Clinical Trials
Overview
Typically, specific demographic subsets tend to exhibit greater engagement in medical research. Nonetheless, there is insufficient research elucidating the trial characteristics influencing the participation of these particular demographics. The study will analyze data from diverse demographic viewpoints to uncover recurring trends that could provide valuable insights for future patients with scleroderma.
Primary outcome measures
- Rate of patients in clinical research for scleroderma [Time frame: 3 months]
- Number of scleroderma study participants who stay committed until clinical study wraps up [Time frame: 12 months]
Eligibility criteria
Inclusion criteria
- Patient has been diagnosed with scleroderma
- Patient has self-identified as planning to enroll in an observational clinical trial
- Patient is a minimum of 18 years or older
Exclusion criteria
- Patient is pregnant
- Inability to perform regular electronic reporting
- Patient does not understand, sign, and return consent form
Criteria are shown verbatim from the registry (in English). Final eligibility is always assessed by the study center.
Healthy volunteers: No
Study design
- Observational model
- Case-crossover
Study locations
United States · 1 center
- Power Life Sciences — San Francisco
Publications
- Careta MF, Leite Cda C, Cresta F, Albino J, Tsunami M, Romiti R. Prospective study to evaluate the clinical and radiological outcome of patients with scleroderma of the face. Autoimmun Rev. 2013 Sep;12(11):1064-9. doi: 10.1016/j.autrev.2013.05.005. Epub 2013 Jun 19. PMID 23791631
- Harb S, Pelaez S, Carrier ME, Kwakkenbos L, Bartlett SJ, Hudson M, Mouthon L, Sauve M, Welling J, Shrier I, Thombs BD; SPIN Physical Activity Enhancement Patient Advisory Team and SPIN Investigators. Barriers and Facilitators to Physical Activity for People With Scleroderma: A Scleroderma Patient-Centered Intervention Network Cohort Study. Arthritis Care Res (Hoboken). 2022 Aug;74(8):1300-1310. do PMID 33527717
- Li SC. Treatment of juvenile localized scleroderma: current recommendations, response factors, and potential alternative treatments. Curr Opin Rheumatol. 2022 Sep 1;34(5):245-254. doi: 10.1097/BOR.0000000000000886. PMID 35880663
Identifiers
NCT: NCT06264492 · 55777205