Scleroderma: Understanding Research Needs

Thank you for your interest in this survey.

TrialScreen is working with Scleroderma Australia to connect more people to health research and provide more options to everyone's healthcare journey. We are looking to host free-to-attend webinars and more resources about health research studies for people living with Scleroderma in 2024. To make sure the content is relevant and of value, we invite you to complete this survey about Scleroderma research areas that you are interested in.

This survey will take about 4 minutes to complete.

If you have any questions, please email Nick Lam, patient outreach lead, via research@trialscreen.org.

PRIVACY NOTICE: Your privacy is of utmost importance. This survey platform, Alchemer, is compliant with The Health Insurance Portability and Accountability Act of 1996 (HIPAA). TrialScreen is compliant with the Australia Privacy Act 1988, HIPPA, and the General Data Protection Regulation (EU) 2016/679 (GDPR). All responses will be de-identified for analysis. The de-identified response will be stored in our secure database for up to 5 years, allowing for longitudinal analysis, and be deleted afterwards.

Aggregated results from the analysis using deidentified data will be shared with Scleroderma Australia, researchers and our partners, and on TrialScreen's website (trialscreen.org) and social media channels.

1. What of the following best describes your relationship to scleroderma? *This question is required.

2. For how many years have you been living with scleroderma? *This question is required. This question requires a valid number format.

Considering all the ways in which scleroderma may affect you, how much has scleroderma affected you this month?

(1 = not at all, 10 = as bad as it could be)

*This question is required.

	1	2	3	4	5	6	7	8	9	10
Not at all	1	2	3	4	5	6	7	8	9	10	As bad as it could be

2. Have you ever participated in any of the following types of research study relating to scleroderma? (Please select all that apply) *This question is required.

Point Survey (a single assessment of your illness/history)
Observational Study (where you might complete a series of surveys over time)
Clinical Trial (where you might be given a medicine to take and evaluate over time)
Other - Write In (Required) Please enter an 'other' value for this selection. * This question is required.

2. If you were invited to participate in a research study to improve our understanding and treatment options for scleroderma, how likely would you be to consider participating? *This question is required.

Very Unlikely	Unlikely	Neither Likely or Unlikely	Likely	Very Likely
Very Unlikely	Unlikely	Neither Likely or Unlikely	Likely	Very Likely

3. For the following 10 research areas, please rank their priority from 1 to 10 (1 being highest priority)? *This question is required.

New treatment options - Research into new therapies specifically designed to slow down or halt the progression of scleroderma
Early Diagnosis and Screening - Development of diagnostic tools to identify scleroderma at earlier stages, potentially improving treatment outcomes
Pain Management Strategies - Investigating effective methods for managing chronic pain and discomfort associated with scleroderma
Gastrointestinal Complications - Understanding and addressing GI complications like acid reflux, malabsorption, and intestinal issues that are common in scleroderma
Lung Involvement and Pulmonary Fibrosis - Research focused on treatments to prevent or reduce lung damage, which is a leading cause of morbidity in scleroderma
Skin and Joint Symptoms - Exploring therapies for skin thickening, stiffness, and joint pain that impact daily functioning and quality of life
Fatigue and Energy Management - Investigating causes and potential treatments for fatigue, a significant symptom that affects many people with scleroderma
Mental Health and Emotional Support - Examining the psychological impact of scleroderma and effective ways to provide mental health support
Autoimmunity and Disease Mechanisms - Research on the underlying autoimmune mechanisms in scleroderma, with a focus on understanding what triggers and drives disease progression
Digital Ulcers and Blood Flow Issues - Studying prevention and treatment options for digital ulcers, Raynaud's phenomenon, and other blood flow complications

4. Imagine you are speaking directly to clinical research specialists for scleroderma. Is there anything you would like to ask them / tell them?

5. How would you describe your gender? *This question is required.

6. How would you describe your gender? *This question is required.

Please enter an 'other' value for this selection.

6. Which state do you live in? *This question is required.

Please enter an 'other' value for this selection.

Scleroderma: Understanding Research Needs

Share your thoughts about scleroderma research