Food choices & 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 worldwide 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.
Some facts about the research study:
- The diet lasts for 4 weeks only
- You are not able to choose your diet
- We can’t tell you what is special about your diet until after the 4 weeks
- The study is conducted by telephone and online
- There are questionnaires to fill-out online or by telephone just before you start the study and during the last week of your diet
- All study diet options are known to be safe and healthy and should not affect weight gain or loss
- The study diets are guided by general instructions regarding food choices; there are no specific ‘assigned meals’; however we may provide recipes that you might be interested that fit with your diet
- Participants cannot have a positive test for celiac disease; as this may confuse symptoms related to celiac versus scleroderma
- If participants are already on a special type of diet; if they desire to participate they may have to stop that diet for a few weeks before starting the study diet. (Some exceptions to this are diabetic diets, low cholesterol or heart diets. These diets are allowed.)
- If you are interested in participating, you will be asked to provide consent and allow us to contact your doctor to send us a few recent lab results
- There is no monetary compensation for participation
- We hope to understand if any parts of a diet affect symptoms related to scleroderma.
- You will be informed of the study results as soon as the analysis is complete!
If you are interested in participating: email CTDresearch@tulane.edu with your name and telephone number. Dr. Saketkoo or Ms. Jensen will call and/or email you.
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If so, you may be eligible to take part in the DECODE Scleroderma Study
FESCA is proud to be a partner of a the new This is Living campaign launched last month by Boehringer Ingelheim.
We are happy to share with you our latest newsletter. Read about World Scleroderma Day 2021, projects, our next world congress and more.