Abstract 1336P
Background
Rare cancers (RC) defined as those with incidence <6/100000 per population, constitute a significant proportion of cancers (∼20%) when considered collectively. Challenges in diagnosis, trial recruitment, and non-standardized treatment approaches result in inferior outcomes of RC. The current study aimed to map the epidemiology of RC in SAARC countries, compile the RC list, compare it with the internationally accepted RC list (RARECAREnet)and explore the RC trends based on age, gender, regional differences.
Methods
We collected data from 30 Population-Based Cancer Registries (PBCR) of India and the published national registries of Nepal, Bhutan and Sri Lanka (SL) and compared them with the standard RARECAREnet RC list.
Results
Due to the lower incidence of cancer in SAARC countries, (with the standard definition <6/100000 per population), 67·5%, 68·3%, 62·3% and 37% of all incident cancers were defined as RC in India, Bhutan, Nepal and SL respectively. The use of an arbitrary cut-off of CR<3 included only 43%, 39.5%, 51.8% and 17.2% of incident cancers as RC in these countries. CR< 3 may represent a more appropriate threshold to identify the lead thrust areas for tumor care in this region. There are similarities and notable differences between the RC lists of SAARC region with that of the European RC list. Oral cavity cancers are rare in Europe while pancreas, rectum, urinary bladder and melanomas are common. In addition, uterine, colon and prostatic cancers are rare in India, Nepal and Bhutan. In SL, thyroid cancer is common. Further, there are gender-related and regional differences in the RC trends in SAARC countries. The distinct population characteristics and RC epidemiology may imply towards the differential screening policies including those oriented towards high-risk populations. Nevertheless, PBCR data is based on cancer sites and lacks data on rare histologies which is a limitation.
Conclusions
The first study to map Rare Cancers in SAARC regions highlight that it is an unmet need to capture epidemiological nuances in RC as a first step towards understanding unique issues prevalent in developing world and may guide policymakers to adopt appropriate measures to improve RC care and tailor public health interventions. Regional and Global collaborations are highly warranted to select resource appropriate care for these rare “Forgotten Cancers”.
Clinical trial identification
Editorial acknowledgement
Legal entity responsible for the study
The authors.
Funding
Has not received any funding.
Disclosure
J. Bajpai: Financial Interests, Institutional, Invited Speaker, Institutional financial interests for conducted research: Eli Lilly; Financial Interests, Institutional, Invited Speaker, Institutional financial interests for conducted research: Novartis, Roche, Paxman Coolers Ltd,; Financial Interests, Institutional, Invited Speaker, Institutional financial interests for conducted research(completed study): Samsung Bioepis co. Ltd; Financial Interests, Institutional, Invited Speaker, Institutional financial interests for conducted research(completed study): Sun Pharma; Non-Financial Interests, Advisory Role: Novartis; Non-Financial Interests, Leadership Role, Founder General Secretary: Immuno-Oncology Society of India (IOSI); Non-Financial Interests, Leadership Role, Executive Committee Member: Indian Society of Medical and Paediatric Oncology (ISMPO); Non-Financial Interests, Leadership Role, Founder Member and Joint Secretory: Teenage and Young Adult Cancer Foundation (TYAcan); Non-Financial Interests, Leadership Role, Managing Committee Member: Indian cooperative Oncology network (ICON). S. Gupta: Financial Interests, Personal, Other, Member of various committees related to guidelines, drug pricing, others: Indian Council of Medical Research, Government of India; Financial Interests, Personal, Other, Member of Scientific Committee on nano-biosensors for healthcare apllications. Council of Scientific and Industrial Research, Government of India; Financial Interests, Personal, Other, Scientific committee member for appraisal of scientific projects submitted to DBT for funding. Department of Biotechnology, Government of India; Financial Interests, Personal, Other, Scientific committee member for appraisal of scientific projects submitted to India Alliance for funding. India Alliance is a partnership between Wellcome Trust and Department of Biotechnology (Government of India) to fund healthcare related research in India: India Alliance; Financial Interests, Institutional, Other, Steering Committee member for a global clinical trial (CLEE011A2207). Honorarium to institution: Novartis; Financial Interests, Institutional, Other, Steering Committee member for a global clinical trial. Honorarium to institution: AstraZeneca; Financial Interests, Institutional, Advisory Board, Advisory Board member on ovarian cancer. Honorarium to institution.: AstraZeneca UK Limited; Financial Interests, Institutional, Advisory Board, Advisory Board member on metastatic breast cancer. Honorarium to institution.: Eli Lilly & Company (India) Limited; Financial Interests, Institutional, Invited Speaker, Invited speaker on cervical cancer at an academic conference. Honorarium to institution.: SEOUL NATIONAL UNIVERSITY HOSPITAL; Financial Interests, Institutional, Invited Speaker, Chairperson at a conference. Honorarium to institution: Lupin Limited; Financial Interests, Institutional, Invited Speaker, Chairperson, speaker, or panelist at 5 conferences/meetings. Honoraria to institution.: Roche Products (India) Private Limited; Financial Interests, Institutional, Invited Speaker, Chairperson, panelist, or speaker at a 3 meetings/roundtable. Honoraria to institution.: Novartis Healthcare Pvt. Ltd.; Financial Interests, Institutional, Invited Speaker, Chairperson at 2 conferences/meetings. Honoraria to institution.: Eli Lilly & Company (India) Limited; Financial Interests, Institutional, Invited Speaker, Invited speaker in a conference. Nag Foundation is a not-for-profit registered society working in the field of cancer: Nag Foundation; Financial Interests, Institutional, Invited Speaker, Invited panelist in a meeting. Honorarium to institution: Eisai Company Limited; Financial Interests, Institutional, Invited Speaker, Invited speaker. Honorarium to institution: Omnicuris Healthcare Private Limited; Financial Interests, Institutional, Invited Speaker, Invited panelist at a conference. Honorarium to institution: Cipla Limited, Cadila Pharmaceuticals; Financial Interests, Institutional, Invited Speaker, Invited chairperson at a conference. Honorarium to institution.: Intas Pharmaceuticals Limited; Financial Interests, Institutional, Invited Speaker, CO40016 Titled - A Double Blind, Placebo- Controlled, Randomized Phase III Study of IPATASERTIB in combination with Paclitaxel As a treatment for patients with PIK3CA/AKT1/PTEN-Altered, Locally Advanced or Metastatic, Triple Negative Breast cancer or Hormone Receptor – Positive, HER2 – Negative Breast Cancer: F. Hoffmann-La Roche Ltd; Financial Interests, Institutional, Invited Speaker, National coordinating PI of a multi-omics study in ER positive breast cancer: Department of Biotechnology, Government of India; Financial Interests, Institutional, Invited Speaker, EGC002: Phase III, Randomized, Multicenter, Double-blind Study to Compare Efficacy and Safety of EG12014 (EirGenix Trastuzumab) with Herceptin® as Neoadjuvant Treatment in Combination with Anthracycline/Paclitaxel-based Systemic Therapy in Patients with HER2-positive Early Breast Cancer: EirGenix Inc.; Financial Interests, Institutional, Invited Speaker, Protocol No. - CLEE011A3201C: A phase II randomized study of the combination of Ribociclib plus goserelin acetate with Hormonal Therapy versus physician choice chemotherapy in premenopausal or perimenopausal patients with hormone receptorpositive/HER2-negative inoperable locally advanced or metastatic breast cancer - RIGHT Choice Study: Novartis Healthcare Pvt. Ltd.; Financial Interests, Institutional, Invited Speaker, Protocol No. - D9100C00001 : A Phase III, Randomized, Multi-Center, Double-Blind, Global Study to Determine the Efficacy and Safety of Durvalumab in Combination With and following Chemoradiotherapy Compared to Chemoradiotherapy Alone for Treatment in Women With Locally Advanced Cervical Cancer (CALLA): AstraZeneca Pharma India limited.; Financial Interests, Institutional, Invited Speaker, Protocol No. - CLEE011A2207: A phase II, multicenter, randomized, open-label study to evaluate the safety and efficacy of 400 mg of ribociclib in combination with non-steroidal aromatase inhibitors for the treatment of pre- and postmenopausal women with hormone receptor-positive, HER2-negative advanced breast cancer who received no prior therapy for advanced disease: Novartis Healthcare Pvt. Ltd.; Financial Interests, Institutional, Invited Speaker: Glenmark Pharmaceuticals Ltd.; Financial Interests, Institutional, Invited Speaker, Protocol No. - D0816R00025 : A Prospective, Multicentre, Phase-IV Clinical Trial of Olaparib in Indian Patients with Platinum Sensitive Relapsed Ovarian Cancer who are in Complete or Partial Response Following Platinum Based Chemotherapy and Metastatic Breast Cancer with Germline BRCA1/2 Mutation (SOLI Study): AstraZeneca Pharma India Limited; Financial Interests, Institutional, Invited Speaker, Protocol No. - D3614C00001 : A Phase III Double-blind Randomised Study Assessing the Efficacy and Safety of Capivasertib + Paclitaxel Versus Placebo + Paclitaxel as First-line Treatment for Patients with Histologically Confirmed, Locally Advanced (Inoperable) or Metastatic Triple-Negative Breast Cancer (TNBC).: AstraZeneca Pharma India Limited; Financial Interests, Institutional, Invited Speaker, PIK3CA Registry- A descriptive study of PIK3CA mutations in patients with HR+/Her2- advanced breast cancer.: Novartis Healthcare Private Limited; Financial Interests, Institutional, Invited Speaker, Protocol No. - D967JC00001 : A Phase 1b/2 Multicentre, Open-label, Modular, Dose-finding and Dose-expansion Study to Explore the Safety, Tolerability, and Anti-tumour Activity of Trastuzumab Deruxtecan (T-DXd) in Combination with other Anti-cancer Agents in Patients with HER2-positive Metastatic Breast Cancer (DESTINY-Breast07): AstraZeneca Pharma India Ltd.; Financial Interests, Institutional, Invited Speaker, Protocol No. - D9670C00001 : A Phase 3, Randomized, Multi-center, Open-label Study of Trastuzumab Deruxtecan (T-DXd) Versus Investigator's Choice Chemotherapy in HER2-low, Hormone Receptor Positive Breast Cancer Patients whose Disease has Progressed on Endocrine Therapy in the Metastatic Setting (DESTINY-Breast06): AstraZeneca Pharma India Ltd.; Financial Interests, Institutional, Invited Speaker, D9311C00001 ''A Randomised, Multicentre, Double-blind, Placebo-controlled, Phase III Study of First-line Carboplatin and Paclitaxel in Combination with Durvalumab, Followed by Maintenance Durvalumab with or without Olaparib in Patients with Newly Diagnosed Advanced or Recurrent Endometrial Cancer (DUO-E): AstraZeneca; Financial Interests, Institutional, Invited Speaker, WO42633 A phase III, randomized, double-blind, placebo-controlled clinical trial toevaluate the efficacy and safety of adjuvant atezolizumab or placebo and trastuzumab emtansine forher2-positive breast cancer at high risk of recurrence following preoperative therapy (ASTEFANIA study): Roche Products (India) Pvt. Ltd.; Financial Interests, Institutional, Invited Speaker, MO42921 a multi-country observational retrospective study to evaluate the prevalence of pd-l1 and its role in patients with tnbc treated with systemic therapy (VANESSA): Roche Products India Pvt Ltd.; Financial Interests, Institutional, Invited Speaker, Cost-effectiveness Analysis & Value-Based Pricing for Anti-Cancer Drugs: Implications for Patients, Industry, Insurer and Regulator: Department of Health Research, Ministry of Health and Family Welfare, New Delhi; Financial Interests, Institutional, Invited Speaker, Coordinating PI for Multi-Omics Analysis to Decipher Mechanisms of Hormone Resistance in Breast Cancer: Department of Biotechnology, Government of India; Financial Interests, Institutional, Invited Speaker, Mapping of Breast Cancer: Department of Science and Technology, Government of India; Financial Interests, Institutional, Invited Speaker, Protocol No. - ECTS/16/002 : A multicentric open label phase II safety and efficacy study of ormeloxifene in tamoxifen resistant metastatic/recurrent breast cancer patients: HLL Lifecare Limited (A Government of India Enterprises); Financial Interests, Institutional, Invited Speaker, Protocol No. - D0818R0000 : Protocol no. D0818R00001- A Non-interventional, multicentre study to assess prevalence of BRCA1 and BRCA2 mutation among ovarian, primary peritoneal and fallopian tube cancer patients in India (BRCA study): AstraZeneca Pharma India Ltd.; Financial Interests, Institutional, Invited Speaker, Protocol No. - 1000-16 : An Open Label, Single Arm, Multicentric, Phase IV study to evaluate the safety and efficacy of Bevacizumab of Intas Pharmaceuticals Limited in approved indications: Intas Pharmaceuticals Ltd; Financial Interests, Institutional, Invited Speaker, Protocol No. - Protocol no: 471-13 : A Prospective, Adaptive, Randomized, Open-Label, Multicenter Clinical Trial to assess the Efficacy and Safety of Fixed Dose Combination of Capecitabine & Cyclophosphamide in Patients of Metastatic Breast Cancer with failure of Anthracycline and/or Taxane Chemotherapy: Intas Pharmaceuticals Ltd; Financial Interests, Institutional, Invited Speaker, Protocol No. - MO39196 : A Phase III, Multicentre, randomised, double-blind, placebo controlled study of Atezolizumab ( anti-PD-L1 antibody) in combination with paclitaxel compared with placebo in combination with paclitaxel for patients with previously untreated, inoperable locally advanced or metastatic Triple Negative Breast Cancer.: Roche Products (India) Pvt. Ltd; Financial Interests, Institutional, Invited Speaker, Protocol No. - CBYL719C2301 : A phase III randomized double-blind, placebo controlled study of alpelisib (BYL719) in combination with fulvestrant for men and postmenopausal women with hormone receptor positive, HER2-negative advanced breast cancer which progressed on or after aromatase inhibitor treatment: Novartis Healthcare Pvt. Ltd.; Non-Financial Interests, , Leadership Role, General Secretary of this non-governmental organization (It is a not-for-profit) which aims to help underprivileged patients with breast and gynecological cancers and promotes research and educational activities in these themes: Women's Cancer Initiative - Tata Memorial Hospital; Non-Financial Interests, Leadership Role, President-Elect of ISMPO which is the largest professional organization of medical oncologists in India. It is a not-for-profit registered society.: Indian Society of Medical and Paediatric Oncology (ISMPO); Non-Financial Interests, , Invited Speaker, This is a not-for-profit registered organization which aims to create large databases of genomic and other 'omic' data in breast and other cancers: Indian Cancer Genome Atlas. All other authors have declared no conflicts of interest.