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PubMed This is a summary of 22 peer-reviewed journal articles Updated
Rheumatology

How Do I Find a Scleroderma Specialist?

At a Glance

Finding a scleroderma specialist or recognized Center of Excellence is critical for safely managing this complex disease. An expert rheumatologist coordinates a multidisciplinary team to detect organ complications early, use standard monitoring tools, and tailor a personalized care plan.

In this answer

3 sections

01

Why Specialized Care Matters

02

What is a Scleroderma Center of Excellence?

03

How to Evaluate Your Current Rheumatologist

Finding a specialist with deep experience in treating scleroderma is one of the most critical steps after a diagnosis. Because systemic sclerosis is a rare and complex disease that affects multiple organ systems, the safest and most effective care is typically found at recognized Centers of Excellence, or with rheumatologists who treat a high volume of scleroderma patients and work closely with a team of other specialists.

Why Specialized Care Matters

Scleroderma requires a multidisciplinary approach, meaning your care needs to be coordinated across several medical specialties [1][2][3]. A true scleroderma expert does not work alone. Instead, they act as the primary coordinator (or “quarterback”) for a specialized team [3][4]. Because the disease can affect various parts of the body, this team commonly includes:

  • Pulmonologists to monitor and manage interstitial lung disease (scarring of the lungs) or pulmonary hypertension (high blood pressure in the lungs) [5][6]
  • Cardiologists to evaluate heart function and manage cardiovascular risks [7][8]
  • Gastroenterologists to address dysmotility (issues with how food moves through your digestive tract) [9][10]
  • Nephrologists to monitor kidney health and manage specific risks like scleroderma renal crisis (a sudden, dangerous spike in blood pressure that affects the kidneys) [11][12]

Specialized care ensures that your doctors are focused on the early detection of these organ-specific complications and can provide treatments tailored specifically to you [13][14].

What is a Scleroderma Center of Excellence?

A Scleroderma Center of Excellence is a medical facility that is formally recognized for combining specialized, high-volume patient care with active research [1][15][16]. Receiving care at one of these specialized centers gives you access to comprehensive treatment plans and potential new treatments through clinical trials [1][2].

Major non-profit organizations, including the National Scleroderma Foundation, maintain online directories of these designated centers to help you easily locate expert care [17]. Furthermore, experts at these centers are often members of the Scleroderma Clinical Trials Consortium (SCTC), an international network of researchers and doctors dedicated to improving standard treatments and advancing personalized medicine in systemic sclerosis [18][19].

How to Evaluate Your Current Rheumatologist

If you are receiving care from a local rheumatologist, it is important to ensure they have the specific experience needed to manage systemic sclerosis safely. A doctor’s expertise in systemic sclerosis is best measured by how many scleroderma patients they see, their use of widely accepted treatment plans, and their ability to bring together a team of other specialists [17][20][21].

You can gauge their experience level by observing how they track your disease over time. A specialist should regularly use standardized tools like the modified Rodnan Skin Score (mRSS)—a physical exam where the doctor gently pinches the skin in various areas to measure thickness—to monitor changes in your skin [13]. They should also customize your screening requirements based on your specific disease subtype (limited versus diffuse) and your autoantibody profile (specific proteins in your blood, such as anti-Scl-70, anti-centromere, or anti-RNA polymerase III, that help predict your disease course) [22].

If your local doctor only treats a few scleroderma patients a year, you do not necessarily have to abandon them. Many patients use a “shared care” approach: you see your local rheumatologist for routine bloodwork and day-to-day management, but you consult with a Scleroderma Center of Excellence once or twice a year to guide the overall treatment plan. This team approach provides peace of mind and access to the latest therapies without requiring constant travel.

Common questions in this guide

What kind of doctor treats scleroderma?
Scleroderma is primarily treated by a rheumatologist who has specific expertise in the disease. Because it affects multiple systems in the body, your rheumatologist will typically coordinate care with other specialists, including pulmonologists, cardiologists, and gastroenterologists.
What is a Scleroderma Center of Excellence?
A Scleroderma Center of Excellence is a medical facility formally recognized for providing high-volume, specialized patient care alongside active research. Receiving care at one of these centers gives you access to comprehensive treatment plans, multidisciplinary teams, and clinical trials.
How can I tell if my rheumatologist is a scleroderma expert?
An expert will treat a high volume of systemic sclerosis patients and coordinate with a multidisciplinary team. They should regularly use standardized tracking tools, like the modified Rodnan Skin Score, and base your screening requirements on your specific autoantibody profile.
Can I keep my local rheumatologist if I go to a specialized center?
Yes, many patients use a shared-care approach to minimize travel. This involves seeing your local rheumatologist for routine bloodwork and daily management while consulting with a Scleroderma Center of Excellence once or twice a year to guide your overall treatment plan.

Questions to Ask Your Doctor

Curated prompts to bring to your next appointment.

  1. 1.How many systemic sclerosis patients do you personally treat each year?
  2. 2.Do you have a dedicated multidisciplinary team (including pulmonologists, cardiologists, and gastroenterologists) that you coordinate with for your scleroderma patients?
  3. 3.Are you affiliated with the National Scleroderma Foundation or the Scleroderma Clinical Trials Consortium (SCTC)?
  4. 4.Do you use standardized measures, like the modified Rodnan Skin Score (mRSS), to monitor my disease progression at my visits?
  5. 5.At what point in my disease progression would you consider referring me to a specialized scleroderma center or for a clinical trial?

Questions For You

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Related questions

Does Anti-RNA Polymerase III Increase Cancer Risk?How Does Scleroderma Affect Your Teeth and Mouth?Does Morphea Turn Into Systemic Sclerosis?Eosinophilic Fasciitis vs Scleroderma: Key DifferencesHow Do You Stop a Raynaud's Attack in Scleroderma?How to Manage Scleroderma GERD: Sleep Positions & TipsScleroderma mRSS: Modified Rodnan Skin Score ExplainedWhat Is a Nailfold Capillaroscopy for Scleroderma?Why Does Scleroderma Cause Bloating & Bowel Issues?What is the Life Expectancy with Scleroderma?How to Do Mouth Stretching Exercises for SclerodermaWhy Do Scleroderma Fingers Change From Puffy to Tight?Can You Have Scleroderma Without Skin Changes?Why Are Corticosteroids Dangerous in Scleroderma?

References

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This page provides educational information on finding specialized care for scleroderma. It is not intended to replace professional medical advice. Always consult with your healthcare provider regarding your specific treatment plan and referrals.

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