Scleroderma Registry

Overview

About this study

The purpose of this study is to allow standardized collection of clinical information, survey information, and blood samples from patients with scleroderma, and allows for use of that data for future epidemiological and translational research projects.

 

 

Participation eligibility

Participant eligibility includes age, gender, type and stage of disease, and previous treatments or health concerns. Guidelines differ from study to study, and identify who can or cannot participate. There is no guarantee that every individual who qualifies and wants to participate in a trial will be enrolled. Contact the study team to discuss study eligibility and potential participation.

Inclusion Criteria:

  • Patients with scleroderma meeting either a, b, c, or d:
  • the 2013 ACR criteria;
  • 3 out of 5 CREST (calcinosis, Raynauds, esophageal dysmotility, sclerodactyly, telangiectasias);
  • triad of Raynauds, nailfold capillary abnormalities, and positive scleroderma autoantibody;
  • very early diagnosis of systemic sclerosis (VEDOSS) defined as Raynaud’s, puffy digits, and abnormal nailfold capillaries or positive autoantibody.
  • Patients with overlapping autoimmune phenotypes may be included, provided they meet the 2013 scleroderma classification criteria (a).
  • This protocol will also allow for recruitment of healthy volunteers for comparison studies.

Exclusion Criteria: 

  • Patients without scleroderma will be excluded from the primary disease cohort.
  • Healthy volunteers (for the comparison cohort) will excluded if they have any autoimmune condition(s) (rheumatic, neurologic, hematologic, etc., at the discretion of the primary investigator or co-investigators).

Eligibility last updated 12/6/21.  Questions regarding updates should be directed to the study team contact.

Participating Mayo Clinic locations

Study statuses change often. Please contact the study team for the most up-to-date information regarding possible participation.

Mayo Clinic Location Status Contact

Rochester, Minn.

Mayo Clinic principal investigator

Alicia Hinze, M.D., M.H.S.

Open for enrollment

Contact information:

Kathleen McCarthy-Fruin M.S.

(507) 284-4797

McCarthy-Fruin.Kathleen@mayo.edu

More information

Publications

Publications are currently not available
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