Finding Clinical Trials That May Be Right for You

Although there is a limited pool of patients to draw upon in a disease like scleroderma, organizations like the SCTC are making it possible to further develop investigational therapies while bringing hope to scleroderma patients worldwide. If youre interested in joining a clinical trial or want to nd out more information, try the following:

Scleroderma Clinical Trials

The Scleroderma Clinical Trials Consortium (SCTC) is a charitable, non-prot organization dedicated to nding better treatment for scleroderma. The SCTC was started in 1994 with a handful of members and has grown to an international membership with over 50 centers in the U.S., Canada, the United Kingdom and Europe. Members of the SCTC have organized clinical trials on their own with funding from organizations like the Scleroderma Foundation, the FDA, and the NIH. Not only are they studying medications currently on the market but not approved for scleroderma, but they also support research to establish standard outcome measures for the trials so that the results can be compared over time and with dierent patient groups. A listing of the current clinical trials that are endorsed by the SCTC are listed on their website at www.sctc-online.org. You can also nd a list of member institutions, clinical investigators and study investigators listed as well. If youre interested in participating in any of the trials listed or would like any additional information, make sure to contact the study coordinator at the number listed.

Questions Youll Want Answered Before You Participate

1. What is the main purpose of the study? 2. Who is sponsoring the study? 3. Who is participating in the study? 4. What are the eligibility requirements? 5. How long will the trial last? 6. What do researchers already know about the drug and what other studies have been done? 7. Where is the study being conducted? Multiple sites? 8. Does the study involve a placebo and if so, what are my chances of getting a placebo? 9. What are the side eects of the drug? 10. How do the long-term risks and side eects compare to my current treatment? 11. What kinds of tests and procedures are involved? 12. Will I be reimbursed for any out-of-pocket expenses? 13. Will hospitalization be required? 14. What type of long-term follow-up is involved in the study? 15. How will I know if the treatment is working? 16. What happens if I quit the study? 17. What if I get the placebo but need the actual drug? 18. Will the results of the trial be provided to me? 19. Who is in charge of my safety? 20. How much of my time will this take? 21. How will this aect my daily life? 22. What are the percentages that the drug will be eective?

CLINICAL TRIALS 101

1. Talk with your doctor rst about what the best trial may be for your particular issues. 2. Go to Centerwatch.com. This is an information source for the clinical trials industry. You can search for clinical trials by medical condition or therapeutic area. 3. Look up Clinicaltrials.gov. This website is sponsored by the federal government and provides a listing of clinical trials nationwide. 4. Contact the Scleroderma Clinical Trials Consortium.

What Every Scleroderma Patient Should Know About Clinical Trials

Scleroderma Foundation Southern California Chapter 10319 S. Je erson Blvd. Culver City, CA 90232 (310) 287-0793