How do I find a CLL specialist or center of excellence

Finding a CLL Specialist or Center of Excellence

Finding the right specialist is one of the most important decisions you'll make in your CLL care. Here's how to approach this:

Start with NCCN Member Institutions

The National Comprehensive Cancer Network (NCCN) maintains a network of leading cancer centers across the United States that specialize in treating CLL. According to NCCN Guidelines, these institutions have multidisciplinary teams of hematologists and oncologists with expertise in chronic lymphocytic leukemia.

To find an NCCN member center:

• Visit NCCN.org and use their "Find a Cancer Center" tool
• Search by location or specialty (hematologic malignancies/blood cancers)
• These centers have access to the latest NCCN Guidelines and clinical trials

Look for CLL-Specific Expertise

When evaluating a specialist or center, ask about:

• Experience with CLL specifically - Not all hematologists specialize in CLL. Ask how many CLL patients they treat annually
• Familiarity with modern treatments - BTK inhibitors (like ibrutinib, acalabrutinib), BCL2 inhibitors (like venetoclax), and CAR T-cell therapy are now standard options. Your doctor should be knowledgeable about these
• Access to clinical trials - According to NCCN Guidelines, clinical trials are an important treatment option and should be discussed with you
• Multidisciplinary team approach - The best centers have hematologists, oncologists, nurses, and supportive care specialists working together

Additional Resources

• Leukemia & Lymphoma Society (LLS) - Offers a "Patient Services Directory" and can connect you with CLL specialists in your area
• American Cancer Society - Provides referrals to cancer centers and specialists
• Your current oncologist - Ask for a referral to a CLL specialist if you don't already have one
• Clinical trial databases - Visit ClinicalTrials.gov to find trials near you and identify centers running them

Questions to Ask When Contacting a Center

1. How many CLL patients do you treat annually?
2. What treatment approaches do you typically recommend for newly diagnosed CLL?
3. Do you have access to clinical trials?
4. Can I get a second opinion on my diagnosis and treatment plan?
5. How do you stay current with the latest CLL research and guidelines?

Consider Second Opinions

Getting a second opinion from a CLL specialist is standard practice and recommended, especially before starting treatment. Most centers welcome this, and it can help you feel confident about your treatment plan.

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This information is for educational purposes only. Always consult your healthcare team for personalized medical advice and decisions.