CLL Society Expert Access™ Pilot
Who We Are
The CLL Society, a 501(c) 3 nonprofit, believes that access to CLL expert care is critical for every patient to receive his or her best possible care. Expert access provides a proven survival and outcomes advantage. In other words, those with a CLL expert as part of their team, live longer than those without this advantage. Recognizing the logistic, geographic, and financial challenges of such access, the CLL Society, has partnered with InfiniteMD, along with support of our sponsors, to offer patients access to CLL expertise through a HIPAA compliant online video consultation.
InfiniteMD is an online second opinion service that focuses on using live, synchronous video technology to match patients around the world with top US specialty providers. InfiniteMD has established personal relationships with hundreds of specialists and several large hospital networks, for a specialty physician network well into the thousands. To date, InfiniteMD has performed hundreds of cases for patients around the world. Though InfiniteMD does not solely focus on hematological disorders, 80% of InfiniteMD’s patients seek second opinion consultation for oncology indications, and 90% of consultations have resulted in changes in treatment recommendations.
How This Works
The CLL society will assist in matching your case to a CLL expert. A dedicated InfiniteMD nurse case manager will be assigned to your case to help facilitate your CLL expert consultation. You will communicate directly with the nurse case manager to coordinate retrieval of your medical records and schedule your consultation. Once your consultation is complete, your nurse case manage will coordinate the delivery of your expert written consultation report summary.
In order to retrieve your medical records, your InfiniteMD nurse case manager will need a signed medical records release form, which can be found at the end of this packet. If you would like to receive your consultation report summary via email, please complete the email consent form found at the end of this packet. If you choose to not sign this consent form, your nurse case manager will coordinate alternative delivery.
What We Need From You
- Primary or specialist physician’s reports (Mandatory)
- Initial consultation note and follow up note from 2nd visit to hematologist or oncologist you first saw for diagnosis of CLL
- Hematology/Oncology notes corresponding to each time a different treatment was initiated
- All hematology or oncology notes within past 2 years
- All treatment flow sheets
- List of prescribed medications (Mandatory) (name of prescribed medicine, dose of medicine, frequency you are taking it, and for how long you have been taking it). May be printed from the electronic medical record.
- List of over the counter prescribed medications (name of over the counter medicine, dose of medicine, frequency you are taking it, and for how long you have been taking it). May be printed from the electronic medical record.
- Blood counts or CBC and CMP (Blood Chemistries) (Mandatory)
All CBCs and CMPs in the last 2 years or since diagnosis- whichever is shorter.
- Initial flow Cytometry to ensure correct diagnosis (Mandatory)
All Flow Cytometry results within past 2 years
- FISH (fluorescence in situ hybridization) if applicable (Mandatory)
All FISH results.
- Other CLL blood tests if applicable (Mandatory)
Most recent β2M (beta–2 microglobulin), IgVH mutation status, ZAP 70, Next-Gen sequencing mutational studies, TP53, any other CLL related blood tests.
- Imaging including CT, MRI, PET scans, or ultrasound if applicable (Mandatory)
Reports of most recent imaging. CDs with the actual images may be requested.
- Bone Marrow Biopsy and Aspirate and lymph node biopsies if applicable (Mandatory)
Full report of most recent bone marrow biopsy and aspirate and lymph node biopsies.
- Completion of an online questionnaire regarding CLL
The following list of medical information are optional, if available:
- Operative and biopsy reports if applicable (Optional)
Operative reports for any relevant surgeries/biopsies.
- Discharge summaries if applicable (Optional)
Discharge summaries of any recent (within two years) hospitalizations.
- Other information (Optional)
Any other medical information you or your physician may feel is pertinent to this consultation. You may write a short narrative (600 words or less) about your CLL.
NOTE: All medical records and reports must be submitted in English.