New programme SPARCC puts rare cancers in the spotlight

Imagine having a type of cancer that is so uncommon that your doctor has to look it up to get more information on it. For patients diagnosed with rare cancers, this is a common reality.

Rare cancers are defined as cancers that affect fewer than six per 100,000 people globally. Although uncommon, individually, all rare cancers together account for up to a quarter of all cancer diagnoses and 30% of cancer deaths worldwide. While research has made great strides in improving outcomes for cancer, not all types of cancers have progressed equally. Because each rare cancer type affects so few people, it is often challenging to attract research funding, conduct clinical trials, and raise public awareness. This means patients often face limited treatment options, delayed diagnoses, unnecessary investigations or surgery, and a profound sense of isolation.

To address this gap, the National Cancer Centre Singapore (NCCS) launched the Specialised Programme for Advancing Cancer Care (SPARCC) in July 2026, to provide dedicated care for patients with rare cancers at every stage of their cancer journey — from the point of diagnosis, through treatment to survivorship.

Behind the newly launched Specialised Programme for Advancing Cancer Care (SPARCC) is a multi-disciplinary team of doctors experienced in treating rare cancers.

No more going in circles

A rare cancer patient's journey often begins with an unusual lump and a visit to a general practitioner or polyclinic. From there, the path to diagnosis can be difficult as the symptoms a patient may experience are often atypical or ambiguous.

SPARCC co-lead, Dr Law Yi Chye, Associate Consultant, Department of Lymphoma and Sarcoma, Division of Medical Oncology, NCCS, explains, “Because these conditions are so rare, standardised guidelines across the healthcare system to investigate and manage them are lacking, which leads to inconsistent care. Many patients end up exhausted – going through multiple unnecessary referrals, tests and treatments – before they get the correct diagnosis.”

Through SPARCC, any healthcare professional, regardless of speciality or institution, can refer patients directly to NCCS' multidisciplinary team of doctors who are experienced in treating rare cancers. This direct referral route enables patients to be diagnosed and treated early, with the hope of better outcomes.

Timely care paved the way to better treatment

While on holiday in June 2019, 40-year-old Marcus felt severe abdominal pain and underwent an endoscopy and ultrasound scan at a hospital overseas. The scans revealed a large mass in his small intestine.

He quickly returned to Singapore and went to Singapore General Hospital’s (SGH) Accident & Emergency (A&E) Department, which kickstarted a series of referrals – to a urologist in SGH, then to a surgeon at the Department of Sarcoma, Peritoneal, and Rare Tumours (SPRinT) at NCCS. Less than 2 months later, Marcus had surgery at NCCS to remove the mass and was diagnosed with gastrointestinal stromal tumour, a rare type of soft tissue sarcoma that starts in the stomach or intestine.

His case was assessed by a multi-disciplinary team of specialists at NCCS experienced in treating rare cancers, who prescribed an oral targeted therapy. Although he has since experienced two recurrences and has undergone two more surgeries, Marcus remains fit and is able to live an active life, thanks to the close monitoring of his care team at NCCS. Despite the challenges of living with cancer, Marcus has completed his Master’s degree cum laude, gotten married and now runs two businesses with his wife.

All the right experts under one roof

Caring for rare cancer patients requires nuanced decision-making, drawing on deep knowledge of disease biology and complex case management experience. Under SPARCC, every patient is cared for by a rare cancer workgroup comprising medical oncologists, radiation oncologists, surgical oncologists, subspecialty pathologists, and interventional and diagnostic radiologists. More complex cases are reviewed by tumour boards, for timely recommendations on investigations, referrals, and treatments.

Throughout their journey, patients at NCCS are supported by a dedicated care coordinator who helps them navigate and access additional services they may need. For instance, patients may need genetic counselling if they have a personal or family history of cancer, and would be referred to the NCCS Cancer Genetics Service. Younger patients aged 15 to 45 may need support from the Adolescent and Young Adult (AYA) Oncology programme for advice on fertility preservation or going back to school or work after treatment. Rare cancers disproportionately affect this age group, and many have unique clinical and psychosocial needs.

Pioneering new paths to treatment

For patients with cancers that have limited established therapeutics or drug access, SPARCC helps to enrol them on suitable clinical trials. To address the lack of research on rare cancers, SPARCC will establish its own registry of rare cancer patients, gathering data from Singapore and the region to identify unmet needs and lay the groundwork for future research collaborations. The programme will also drive investigator-initiated clinical trials designed to address the challenge of small patient numbers.

One key vehicle for this is NCCS' STARLIGHT (Steering Translational Rare Cancer Research into the Light) initiative, a translational research programme which aims to uncover the mechanisms behind rare cancers and improve clinical outcomes for patients.

The STARLIGHT Initiative is a translational research programme led by the Cancer Discovery Hub at NCCS, focused on advancing research into rare cancers.

Redefining care for rare cancers

By bringing together the right specialists and services, SPARCC ensures that every rare cancer patient has timely and appropriate care.

"For too long, rare cancer patients have faced their diagnoses with limited treatment options and support. With SPARCC, we want to change that by giving patients the treatment and support they need to navigate their cancer journey and live well," said Clinical Assistant Professor Nagavalli D/O Somasundaram, Senior Consultant, Department of Lymphoma and Sarcoma, Division of Medical Oncology, NCCS, and Co-lead of SPARCC.