Poster Presentation Clinical Oncology Society of Australia Annual Scientific Meeting 2022

Patient vignettes reflecting the impact of The Australian Rare Cancer Portal on patients with rare cancer (#339)

Lia A Papadopoulos 1 2 , Chloe L Georgiou 1 3 , Damien Kee 1 2 4 5 , Caldwell Reece 1 , Ke Helen 1 , Bourne Allison 1 , Haurat Javier 1 , Maureen Turner 1 , David Goldstein 1 6 7 , Clare Scott 1 2 5 8
  1. Australian Rare Cancer Portal, Melbourne, VIC, Australia
  2. WEHI, Fairfield, VIC, Australia
  3. Bendigo Health, Bendigo, VIC
  4. Medical Oncology, Olivia Newton John Cancer and Wellness Centre, Austin Health, Heidelberg, VIC
  5. Peter MacCallum Cancer Centre, Melbourne, VIC
  6. Nelune Center Centre, Prince of Wales Hospital, Randwick, NSW
  7. Prince of Wales Clinical School, UNSW, NSW
  8. Royal Melbourne Hospital, Parkville, VIC

Background

Patients with a rare cancer(RC) diagnosis face unique challenges. Vast geographical distances in the Australian setting further compound challenges in accessing RC sub-specialist expertise, clinical trials, research options and non-reimbursed therapies.

Methods

The ARCP is a national free online referral platform funded by Omico, with support from BioGrid Australia, Rare Cancers Australia (RCA), and The WEHI Stafford Fox Rare Cancer Program (SFRCP).

924 referrals RC in early(30%) and late stages(70%) derive from 62 referring clinicians from every Australian state and from both regional and metropolitan centres. Over 50 experts from Australia and internationally have provided case advice. Referring clinical impact surveys and case reports were analysed to identify impacts of the ARCP.

Results

Five patient case vignettes are exemplars: 47F EGFR-G719mut malignant phyllodes accessed Afatinib via CAS; 30F fibrolamellar cancer sequenced on resection, treated on Phase 1 trial, then self-funded Lenvatinib; 39M with NUT midline carcinoma accessed BETi; 71F BRAFV600E LGSOC from regional centre enrolled on therapeutic trial. These demonstrate ARC Portal patient impacts of: Overcome financial barriers to genomic sequencing; Coordination with industry; Anticipatory advice for early disease; Linking with charity fundraising; Overcoming geographical barriers; Links with clinical trial networks; Identifying molecularly guided therapy.

Our reports provide expertise drawing from, on average, two to five experts and directly altered the treatment delivered to patients in 20/48 of surveyed referrer respondents. We identify access to investigator-driven research efforts to overcome financial barriers to genomic sequencing via the MoST Program funded by OMICO and the WEHI-SFRCP. The ARC Portal expands patients’ treatment options via coordination with clinical trial networks, industry, and RCA for fundraising assistance. The majority of patients (82.5%) have provided consent to access biomarker and tumour specimens. 

Conclusion

The ARC Portal offers patients access to excellent rare cancer care. Formal assessment of relevant endpoints is underway.