InPOG Newsletter. May-Aug 2017 Vol 3, Issue 2. InPOG Executive. Subcommittee Chairs

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InPOG Newsletter May-Aug 2017 Vol 3, Issue 2 InPOG Executive Sameer Bakhshi Amita Trehan Deepak Bansal Tulika Seth Venkat Radhakrishnan Ramandeep Singh Arora Subcommittee Chairs ALL V Saha AML S Bakhshi ChMyelop D Bansal HL J Chandra NHL A Trehan Histiocytosis G Narula CNS G Chinnaswamy NBL S P Yadav Retino S Honavar Renal S Agarwala Liver Priyakumari PNET B Biswas Osteo T Vora STS S Qureshi GCT V Radhakrishnan Rare, epith M Prasad HSCT S Bhat Acc to Care S Jatia Supportive Epidemiology R S Arora Late effects G Kapoor Palliative G Palat Can Genetics N Radhakrishnan Dear InPOG members, We are pleased to report that three studies were granted full registration and another three provisional registration since the last newsletter. This brings the total portfolio of InPOG studies to 23 from 17 different subcommittees i.e. 3/4 th of all subcommittees. Please spend some time going through these individual studies and contact the respective s if you need further information. As mentioned in our previous newsletter, at PHOCON 2017 Kolkata, PHO IAP and local organisers have given us a dedicated time slot to present the results of some ongoing InPOG studies. While the official detailed program has not been released, this is the tentative schedule for InPOG activities. Friday 24 th November 16:30 to 18:00 hours InPOG Executive and Subcommittee presentations Saturday 25 th November 17:00 to 18:00 hours InPOG Studies - Free Papers Throughout the meeting Various subcommittee meetings to be coordinated by respective Chairs. Finally, it is worth pointing out that the three-year term of the present Executive is coming to an end in the next few months. PHO IAP has already initiated the process of forming the next Executive. Similarly, all subcommittees are also in the process of identifying new Chairs. By the next newsletter we should be able to bring to you the new team and thank all those from the existing team who have helped us make this progress. We continue to welcome comments and suggestions on the activities and functioning of InPOG as well on the structure and content of this newsletter Warm wishes 1

Study Summary Portfolio Subcommittee Provisional Reg Full Reg Recruiting ALL InPOG-ALL-15-01 AML InPOG-AML-16-01 ChMyelop Dis InPOG-CML-16-01 HL InPOG-HL-17-02 InPOG HL 15 01 NHL InPOG-NHL-16-01 Histiocytosis InPOG-HIST-17-01 CNS Neuroblastoma Retinoblastoma InPOG-RB-17-01 Renal InPOG-WT-16-01 Liver InPOG-LIV-16-01 Osteosarcoma PNET InPOG-PNET-16-01 Soft Tissue Sarcoma Germ Cell Tumours Rare, Epithelial InPOG-RARE-17-02 InPOG-RARE-17-01 HSCT InPOG-HSCT-16-01 Access to Care InPOG-ACC-16-02 InPOG-ACC-16-03 InPOG-ACC-16-01 Supportive Care InPOG-SUPP-16-02 InPOG-SUPP-16-01 Epidemiology InPOG-EPI-16-01 Late Effects InPOG-LE-17-02 InPOG-LE-16-01 Palliative Care Cancer Genetics InPOG-CANGEN-16-01 2

InPOG studies granted full registration InPOG HL 15 01 A collaborative study for newly diagnosed childhood Hodgkin s lymphoma patients in India Prof Jagdish Chandra Registered with InPOG June 2015 CTRI/2016/03/010916 August 2015 Currently patients recruited 315 Target patient recruitment 350 Anticipated duration of recruitment 3 years 27centres All India Institute of Medical Sciences, New Delhi All India Institute of Medical Sciences, Patna Amrita Institute of Medical Sciences, Kochi - NEW Asian Institute of Oncology, Mumbai Banaras Hindu University, Varanasi Cancer Institute, Chennai Christian Medical College, Ludhiana Deenanath Mangeshkar Hospital, Pune Fortis Memorial Research Institute, Gurgaon Government Medical College, Jammu GVN Cancer Institute, Trichy Hematology-Oncology Clinic, Ahmedabad Indraprastha Apollo Hospital, New Delhi JIPMER, Puducherry - NEW Kalawati Children s Hospital, New Delhi King George s medical University, Lucknow Mahaveer Cancer Sansthan, Patna Max Super Specialty Hospital, Saket, New Delhi Mazumdar Shaw Cancer Centre, Bangalore Meenakshi Mission Hospital & Research Centre, Madurai MNJ Cancer Hospital, Hyderabad Rainbow Children s Hospital, Hyderabad Rajiv Gandhi Cancer Institute, New Delhi Regional Cancer Centre, Thiruvananthipuram Saroj Gupta Cancer Centre and research Institute, Kolkata Sir Ganga Ram Hospital, New Delhi 3

InPOG-ALL-15-01 An Indian Childhood Collaborative Leukemia Groupmulticentre national standardization study for newly diagnosed acute lymphoblastic leukemia Prof Vaskar Saha Registered with InPOG July 2015 CTRI/2015/12/006434 Oct 2016 Currently patients recruited 79 Target patient recruitment 2240 2centres All India Institute of Medical Sciences, New Delhi - NEW Tata Medical Centre, Kolkata InPOG-AML-16-01 Randomized Phase III Study Comparing DA (3+7) Versus ADE as Induction Chemotherapy in children with Acute Myeloid Leukemia Dr Venkatraman Radhakrishnan Registered with InPOG April 2016 CTRI/2014/11/005202 July 2014 Currently patients recruited 75 Target patient recruitment 700 Anticipated duration of recruitment 5 years 3centres Cancer Institute, Chennai MNJ Cancer Hospital, Hyderabad InPOG-LE-16-01 The Indian Childhood Cancer Survivorship Study (C2S study): After treatment completion registry of childhood cancers Phase 1 Dr Rachna Seth Registered with InPOG May 2016 June 2016 Currently patients recruited 513 Target patient recruitment At least 500 (desirable 1000) Anticipated duration of recruitment 5 years 8centres All India Institute of Medical Sciences, New Delhi Cancer Institute, Chennai Indraprastha Apollo Hospital, New Delhi Kalawati Children s Hospital, New Delhi King George s medical University, Lucknow 4

Max Super Specialty Hospital, Saket, New Delhi Rajiv Gandhi Cancer Institute, New Delhi SION Hospital, Mumbai - NEW Tata Medical Centre, Kolkata InPOG-PNET-16-01 Evaluation of clinicopathological characteristics, prognostic factors and treatment outcomes in patients with PNET of Kidney: An InPOG study Dr Bivas Biswas Registered with InPOG June 2016 Yes Currently patients recruited 25 Target patient recruitment At least 50 Anticipated duration of recruitment 6 months 2 centres Tata Medical Centre, Kolkata InPOG-SUPP-16-01 A Prospective Open-labeled Randomized Control Trial of Proactive Enteral Nutrition Versus Standard of Care in Children with Cancer and High Nutritional Risk Dr Brijesh Arora Registered with InPOG July 2016 No Currently patients recruited NA Target patient recruitment 230 Anticipated duration of recruitment 2 years NA InPOG NHL-16-01 A Retrospective Multi-centric Study of Contemporary Epidemiology & Outcome of Childhood B-NHL in India Dr AmitaTrehan Registered with InPOG October 2016 Yes 5

Currently patients recruited 5 Target patient recruitment 300-400 Anticipated duration of recruitment 6 months 9 All India Institute of Medical Sciences, New Delhi - NEW Cancer Institute, Chennai - NEW Indraprastha Apollo Hospital, New Delhi - NEW Max Super Specialty Hospital, Saket, New Delhi - NEW Post Graduate Institute of Medical Education & Research, Chandigarh - NEW Rainbow Hospital, Hyderabad - NEW Rajiv Gandhi Cancer Institute, New Delhi- NEW Rajkot - NEW Tata Medical Centre, Kolkata - NEW InPOG-ACC-16-01 Multi-site Prospective Study to Determine Household Out-of-Pocket Expenditure Incurred by Families of Children Newly Diagnosed with Cancer in India (HOPE Study) Dr Ramandeep Singh Arora Registered with InPOG August 2016 CTRI/2016/11/007492 Yes Currently patients recruited 367 Target patient recruitment 540 Anticipated duration of recruitment 1 year 15 All India Institute of Medical Sciences, New Delhi Apollo Hospital, Chennai Asian Institute of Oncology, Mumbai BJ Wadia Hospital, Mumbai Cancer Institute, Chennai Indraprastha Apollo Hospital, New Delhi Institute of Child Health, Chennai Max Super Specialty Hospital, Saket, New Delhi Safdarjung Hospital, New Delhi Saroj Gupta Cancer Centre and research Institute, Kolkata SION Hospital, Mumbai Sri Ramachandra Medical Centre, Chennai Tata Medical Centre, Kolkata Tata Memorial Hospital, Mumbai 6

InPOG-ACC-16-03- NEW Exploring Barriers and Enablers to Accessing Care for Childhood Cancers in India: A Multicentre Qualitative Study Dr Ramandeep Singh Arora Registered with InPOG May 2017 No Currently patients recruited N/A Target patient recruitment 30-40 patients + 15-20 healthcare providers Anticipated duration of recruitment 3 months 3 Indraprastha Apollo Hospital, New Delhi Max Super Specialty Hospital, Saket, New Delhi InPOG-HIST-17-01 - NEW Indian Hemophagocytic Lymphohistiocytosis Registry (I-HLH): Establishment of a nationwide prospective web-based registry for patients diagnosed with HLH Dr Mukesh Desai Registered with InPOG July 2017 Ongoing No Currently patients recruited N/A Target patient recruitment 300 Anticipated duration of recruitment 5 years NA InPOG-RARE-17-01- NEW Clinical Course, Pathological Spectrum and Outcomes in Paediatric Rare Tumours in India: A Multicentric Observational Study Dr Maya Prasad Registered with InPOG July 2017 No Currently patients recruited N/A Target patient recruitment 250 Anticipated duration of recruitment 1 year NA 7

InPOGstudies granted provisional registration 1. InPOG-SUPP-16-02 (P). A prospective randomized study comparing the safety and cost-effectiveness of antibiotic discontinuation without neutrophil recovery versus with neutrophil recovery in Low-risk febrile-neutropenic children with cancer. PI:Brijesh Arora 2. InPOG-SCT-16-01 (P). Post HSCT outcome in pediatric Acute Lymphoblastic Leukemia. A Multicentre observational study. PI: Sunil Bhat 3. InPOG-CML-16-01 (P). Study of treatment and outcome of chronic myeloid leukemia in children and adolescents in India.PI: Deepak Bansal 4. InPOG-EPI-16-01 (P). Association of gender and childhood cancer registration in India. PI:HariSankaran 5. InPOG-WT-16-01 (P).Indigenously developed Wilms Tumor Protocol. PI:Sameer Bakhshi 6. InPOG-CANGEN-16-01 (P). Evaluation of underlying genetic predisposition for acute myeloid leukemia in children and young adults.pi:ic Verma 7. InPOG-LIV-16-01 (P). The Indian Paediatric Liver tumour study (IPLT Study) Indian Paediatric Liver Tumour Registry: Multicentre study. PI: T Priyakumari 8. InPOG-ACC-16-02 (P). ACCESSing Childhood Cancer Care in India. PI: Ramandeep Arora 9. InPOG-HL-17-02 (P) Prospective Collaborative Study for Relapsed/Refractory Hodgkin Lymphoma. PI: AmitaMahajan 10. InPOG-LE-17-02(P) Cross-Sectional Study of Late Effects in Longterm Survivors of Childhood Hodgkin Lypmphoma. PI: Maya Prasad NEW 11. InPOG-RARE-17-02 (P) A Multicenter, prospective, pilot study on use of platinum-based chemotherapy for pediatric nasopharyngeal carcinoma and exploration of the role of peripheral (whole) blood Epstein-Barr virus (EBV)- DNA PCR in predicting outcome and detecting relapse. PI: Anirban Das NEW 12. InPOG-RB-17-01 (P) A Prospective Collaborative Study for Newly Diagnosed patients with Retinoblastoma. PI: SantoshHonavar NEW 8