Research Study Opportunity - The Role of Environmental Factors in Scleroderma
If you are a patient with systemic scleroderma (systemic sclerosis), you are
being asked to participate in a research study on the role of environmental
factors in Scleroderma. Environmental factors are suspected to play a role in
the development of Scleroderma. This is a research project being conducted by
the Medical University of South Carolina (MUSC).
You can only participate in this survey if you are a patient with
Scleroderma. Your participation in this research study is voluntary.
If you have any questions about the research study, please contact Dr. Carol
Feghali-Bostwick or Dr. Celine Ward at 843-972-8944 or at wardce@musc.edu. This research has been
reviewed and approved by the MUSC Institutional Review Board for research
involving human subjects.
Calcinosis is Associated with Digital Ischaemia in Systemic Sclerosis - A Longitudinal Study
A longitudinal study was published from the Oxford Journals - Rheumatology. The objective of this study was to determine if ischaemia is a causal factor in the development of calcinosis in Systemic Sclerosis (SSc).
Video: Grand Lecture - Scleroderma Lung Disease: "Why am I so Short of Breath?"
We are happy to announce that select videos from the 2016 National Conference are now available online. They can be found on our YouTube channel. In this session, Dr. Richard Silver reviews the mechanism of breathing and the multiple potential causes of breathlessness in patients with scleroderma.
Many people living with scleroderma perceive that what they eat influences
their symptoms related to scleroderma. This study is inspired by people
attending the Scleroderma Foundation Patient Conference who expressed a desire
for research such as this to be conducted.
If you are a person with scleroderma and you experience related
gastrointestinal symptoms such as bloating, cramping, nausea, vomiting,
regurgitation, diarrhea, constipation etc., you may be interested in
participating in this research study.
This is a national study run by the New
Orleans Scleroderma Patient Care and ResearchCenter (Lesley
Ann Saketkoo, MD, MPH, Tulane
University Lung Center) using telephone counseling and online
questionnaires to assess the impact of various diets that might impact symptoms
in scleroderma.
Disclaimer: The Scleroderma Foundation in no way
endorses any drugs, treatments, clinical trials, or studies reported in the eLetter. Information is
provided to keep the readers informed. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.
