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eLetter #676 | September 16, 2016  

Research Study Opportunity - The Role of Environmental Factors in Scleroderma

MUSC Logo.jpgIf 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.

https://redcap.musc.edu/surveys/?s=KADL7CLTEC

Calcinosis is Associated with Digital Ischaemia in Systemic Sclerosis - A Longitudinal Study

oxfordlogo.jpegA 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). 

Click here for more >>

Video: Grand Lecture - Scleroderma Lung Disease: "Why am I so Short of Breath?"

GLv1.jpgWe 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.

View the entire session here >>

Additional Research Opportunities

Food Choices and 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 Research Center (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. 

Click here for more >>

 
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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.

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