Scleroderma Specialists

Scleroderma Experts

Scleroderma Experts
—EUSTAR (European Countries)
—SCTC (U.S. & Worldwide)
Finding Rheumatologists (General)

Finding Doctors (General)
Physician/Patient Relationships
About Doctors and Clinics

Finding a Scleroderma Expert

In a hurry? Quick links for scleroderma experts:

Medications Many scleroderma patients seek a consultation with doctors who specialize in scleroderma. This is a great way to get information on the latest therapies available.

Scleroderma experts are most often rheumatologists, although some of them are dermatologists. If you live far away, they will usually coordinate your care with your local medical team.

EUSTAR and SCTC are the scleroderma expert centers most highly recommended by the nonprofit International Scleroderma Network for patients, for the diagnosis and treatment of scleroderma and related illnesses or symptoms.

Scleroderma Treatment Differs Among Experts vs. General Rheumatologists. Scleroderma experts see more systemic sclerosis (SSc) patients and use more immuno-suppressives including unproven treatments. They also use less drugs where a negative trial exists (ie.as with D-pen) than other rheumatologists. There are some differences in the treatment of SSc between Canada, the US and the SCTC, perhaps due to the lack of guidelines and proven interventions. SCTC may treat more severe cases, but it also may be that ILD (interstitial lung disease) and PAH (pulmonary arterial hypertension) are under-recognized by non-experts. J. E. Pope. Pres. No. 473. ACR Conference Oct. 2003 (Also see: Pulmonary Fibrosis, Pulmonary Hypertension, and Clinical Trials )

EUSTAR Scleroderma Centers (European Countries)

EUSTAR Scleroderma Centers are primarily in European countries. They diagnose and treat scleroderma patients as well as conduct research studies.

Patients and Caregivers: for the diagnosis and treatment of scleroderma or similar illnesses or symptoms, or to participate in clinical trials, please contact any of the EUSTAR centers for appointment information:

Juvenile Scleroderma? If your child has scleroderma, make sure the center also treats children with scleroderma, since many of centers do not have scleroderma pediatric rheumatology specialists.

EUSTAR Affiliated Centers are devoted to the care and study of scleroderma according to the EUSTAR minimal clinical requirements. Countries listed include Argentina, Austria, Belgium, Brazil, Bulgaria, Croatia, Czech Republic, Denmark, Egypt, Estonia, Finland, France, Macedonia, Germany, Greece, Hungary, Ireland, Israel, Italy, Korea, Lithuania, Malta, Norway, Poland, Portugal, Romania, Russia, Saudia Arabia, Serbia and Montenegro, Slovak Republic, Slovenia, Spain, Sweden, Switzerland, The Netherlands, Turkey, United Kingdom, and a few centers in USA.

EUSTAR Members are centers which are affiliated with EUSTAR and that have also completed their MEDS forms.

EUSTAR Background

The EULAR Scleroderma Trials and Research Group (EUSTAR) aims to foster the awareness, understanding and research of scleroderma and its management throughout Europe. Requirement for center affiliation is the capacity to care for scleroderma patients according to the EUSTAR minimal clinical requirements.

Scleroderma Clinical Trials Consortium (SCTC)

SCTC Scleroderma Centers are primarily in U.S., Canada, South America, Europe, Asia, and Australia. They diagnose and treat scleroderma patients as well as conduct research studies.

Patients and Caregivers: for the diagnosis and treatment of scleroderma or similar illnesses or symptoms, or to participate in clinical trials, please contact any of the SCTC centers for appointment information:

Juvenile Scleroderma? If your child has scleroderma, make sure the center also treats children with scleroderma, since many of centers do not have scleroderma pediatric rheumatology specialists.

SCTC Main Roster of Scleroderma Centers lists the specialists in:

Asia (Pakistan)

Australia (New South Wales)

Canada (Ontario, Quebec)

Europe: England, France, Germany, Hungary, Ireland, Italy, The Netherlands, Norway, Poland, Scotland, Sweden, Switzerland, Turkey. (Also see EUSTAR)

U.S.: Alabama, Arizona, California, Colorado, Connecticut, District of Colombia, Illinois, Indiana, Louisiana, Maryland, Massachusetts, Michigan, New Jersey, New York, North Carolina, Ohio, Pennsylvania, Rhode Island, South Carolina, Texas, Washington, Wisconsin.

South America (Argentina, Uruguay)

ISN/SCTC Research Fund

The nonprofit International Scleroderma Network (ISN) supports top-notch peer-reviewed worldwide scleroderma research through the collaborative ISN/SCTC Research Fund. Your enthusiastic support of this fund will help provide better treatments for scleroderma! What can you do to help?

SCTC Background

TheScleroderma Clinical Trials Consortium (SCTC) is a nonprofit worldwide affiliation of more that 50 academic medical centers with dedicated programs for persons with scleroderma and related diseases. The SCTC emphsizes high quality research and physician education for management and treatment of scleroderma.

Finding Doctors (General)

AmericasDoctors.com. This site offers free, real-time, one-on-one chat with a doctor, 24 hours a day. (They will not diagnose, treat, or arrange appointments.)

Finding Rheumatologists (General)

There are some significant differences between general rheumatologists and scleroderma experts. Many people with scleroderma have a local rheumatologist plus they also consult a scleroderma expert, too. Often this requires advance planning and travel, since experts are often few and far between. See Scleroderma Experts.

American College of Rheumatology: Worldwide Electronic Directory of Members Scleroderma patients are usually treated by rheumatologists. Due to the rarity of Scleroderma, most rheumatologists have little if any experience in treating Scleroderma. Therefore, many patients also have occasional consultations with a Scleroderma expert. See the Scleroderma Clinical Trials Consortium, below.

European League Against Rheumatism For general rheumatologists in European countries. (For scleroderma experts, see the EUSTAR and SCTC listings above.)

The Value of Rheumatologists' Care. Given the prevalence and impact of rheumatic and musculoskeletal diseases, physicians trained in the care of these conditions would likely bring added value to an integrated delivery system. S. Gabriel. SP0050 EULAR 2003.

Physician and Patient Relationships

New survey of 1000 patients highlights burden of disease in scleroderma. The results highlighted the need for greater support for patients from healthcare professionals with almost a third of respondents stating they were not aware of the type of scleroderma they have. The deadly nature of scleroderma means that it is crucial for patients to have a good understanding and education of the disease they are forced to live with every day. A.H. Mawdsley. PAR0015. EULAR 2008.

Prepared patients: Internet information seeking by new rheumatology patients. The majority of patients research their conditions online prior to initial appointments, but are unlikely to discuss it with physicians. Physicians may want to consider strategies for enabling communication about online research. M. Cameron Hay (Wiley) Arthritis Care & Research. Vol 59, Issue 4 , Pp 575 - 582. 04/27/08. (Also see: Web searches)

5 Ways To Help Your Doctor Help You. In an ideal world, a doctor would have your health history, the medications you're taking and lab results right in front of him. But we live in reality, and the reality is that these things are often lost in a mound of paperwork. CNN.com. 03/03/08.

Report: Many Docs Bend Ethics Beliefs. Gap Is Wide Between Professional Standards, Behavior. A survey of American doctors released Monday shows wide gaps between what doctors say they believe about practicing medicine ethically and what they actually do to fulfill them. WebMD. 12/03/07.

Know when it's time to fire your doctor. Here are five ways to know when it's time to think about leaving your doctor, and the best way to do it. CNN.com/health. 08/17/07.

The public neglect of rheumatic diseases: insights from analyses of attendees in a musculoskeletal disease (MSC) awareness activity. Many individuals having painful MSC seek medical help only when a very high threshold of pain is reached. Even while under treatment, the high mean pain scores suggest neglect of MSC that are not adequately recognised as important contributors to disability and decreased quality of life. Annals of the Rheumatic Diseases 2007;66:697-699. (Also see: Pain Management)

Are rheumatologists' treatment decisions influenced by patients' age? Our findings suggest that rheumatologists’ treatment recommendations may be influenced by age. Future educational efforts should increase physician awareness of this possible bias in order to ensure equal service delivery across ages. Rheumatology 2006 45(12):1555-1557 .

Establishing Trust Between Physicians And Patients With Rheumatic Diseases—Relationships Can Be Improved By Using Patient-centered Approach. Data suggest that trust in physicians is significantly and independently associated with patient's ethnicity and specific components of physicians' communicative style, including informativeness, sensitivity to concerns, and patient-centeredness. Trust can be improved by being sensitive to patients' concerns and providing adequate medical information. Medical News Today. 05/31/06.

About Doctor and Clinics

Rheumatology specialists join Tuality. Lauren Kim, M.D. started Oregon's only dedicated scleroderma clinic. Scleroderma is a disease of the connective tissues and blood vessels that leads to hardening of the skin, and possible damage to internal organs.The Hillsboro Argus. 05/20/08.