Often it takes several years for those with a rare cancer to receive a diagnosis, and even then, only a small percentage of these conditions have FDA-approved treatments. Adding to the complexity, many of these cancers have multisystem involvement.
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Cleveland Clinic Cancer Center and the National Organization for Rare Disorders (NORD) are working together to shorten the diagnostic odyssey, reduce the time-to-treatment and improve patients’ outcomes, including quality of life. As a NORD Rare Disease Center of Excellence, Cleveland Clinic Cancer Center offers a pathway to established teams of specialists who focus exclusively on diagnosing and treating 84 different ultra-rare cancers and blood conditions.
The Cleveland Clinic Rare Cancer program was established with the following key elements:
- Quick and timely access. (All patients requiring a new consultation are guaranteed a clinic appointment within five business days.)
- A highly specialized team of clinicians, including medical and radiation oncologists, geneticists, surgeons and radiologists, with clinical/research interest and expertise in rare cancers
- Dedicated pathologists / hematopathologists with expertise in diagnosing rare hematologic malignancies and solid tumors
- Access to early-stage clinical trials that promote development of novel therapies, including drug repurposing for rare cancers
- A dedicated multidisciplinary team approach for delivering care
- Individualized care as appropriate from cardiologists, pulmonologists, rheumatologists/immunologists, gastroenterologists, neurologists and endocrinologists for patients with multi-organ involvement
- Care managers, social workers, counselors and financial navigators to guide patients with their multiple clinical appointments and provide access to support groups as well as financial and caregiver resources
- Multipronged research efforts aimed at understanding the natural history of these diseases through population studies and internal registries, expanded use of genomic approaches to help diagnose and identify therapeutic targets and development of a tissue biorepository and tissue platforms to accelerate drug discovery
“If a cancer center doesn’t have a formalized system in place, it can cause long diagnostic and treatment delays and anxiety for patients with rare conditions,” explains Cleveland Clinic Director of Rare Cancers and Blood Diseases Sudipto Mukherjee, MD, PhD, MPH. “We developed a dedicated physician disease matrix that includes clinicians from multiple specialties who work together on each of the listed 84 conditions. If someone calls with a rare form of kidney cancer, for example, we have a dedicated team of experts exactly for that condition already working together as a team who can manage that patient’s care.”
The best chance of managing rare cancers and improving outcomes is often through participation in a clinical trial. A member of the NORD Rare Disease Registry, Cleveland Clinic Cancer Center offers virtual and in-person consults, as well as access to a wide range of clinical trials. “While some patients from outside the area choose to receive their care here in Cleveland, for those patients looking to be closer to home, we have adopted a shared care management approach between the rare cancer team in Cleveland and the patient’s local oncologist or hematologist,” says Dr. Mukherjee.
Knowing the toll that a rare disease can take on families, the team brings together resources to help care for the whole patient as well their caregivers. “There are a litany of hardships patients may face,” says Dr. Mukherjee. “Some have spent years searching for a diagnosis, leading to physical and mental anguish, hospitalizations, pain or job loss. Others may be worried that the disease could be genetic and impact their loved ones. Our goal is to work in partnership with NORD to make the journey as simple and manageable as possible for patients and their loved ones.”
Physicians, patients and families can also visit NORD’s I Am Rare web page to access a variety of resources, including:
- Social and financial support
- Rare disease registry and rare disease summit
- Navigators to assist with identifying appropriate clinical trials
- Networking with other families
- Face-to-face and online access to experts from different institutions
“We’re working together to synergize all these resources in a way that makes it easier for patients to navigate,” explains Dr. Mukherjee.
To make a referral, please visit http://www.clevelandclinic.org/cancerreferrals.