INPHOG

The Genesis of the Indian National Pediatric Hematology and Oncology Group (INPHOG)

1992 - 2007: The Early Years

In 1992, the world body of pediatric oncology ‘Societe Internationale Oncologie Pediatrique” (SIOP) under the banner of its PODC (Pediatric Oncology in Developing Countries) division granted 27 scholarships to pediatric oncologists in India to attend the SIOP Congress at Hannover in Germany. This was the first ever such occasion where Indian pediatric oncologists were exposed to leading global collaborative scientific research organizations of that time from all over the world like the CCG, SIOP, NWTS, IRS, CCLG, BFM group and the UK-ALL consortium. This ignited, in the minds of many young researchers in different institutions working on pediatric cancer in this country, a spark of interest to explore the idea of collaborative research and networking for the benefit of children with cancer in our country.

In 1995, this nascent group under the banner of the Pediatric Hematology Oncology (PHO) Chapter of the Indian Academy of Pediatrics (IAP) and with the active support of the SIOP, set up the Indian National Training Project in Practical Pediatric Oncology (INTP- PPO) with the aim to educate pediatricians all over the country in the basics of Pediatric oncology. Led by Dr. Bharat Agarwal, this program was a resounding success all over the country which resulted in not only a significant increase in early referrals to pediatric cancer care centers but also in introducing the concept of “shared care” to the referring pediatrician. In its many subsequently modified forms, it continues providing yeoman service to this day.

A significant and welcome fall out of this project was the extensive networking opportunity it afforded to the existing but limited pool of Pediatric Oncologists in India who as a result of frequent meetings and interactions were now being made aware of the benefits of “collaboration for education” to the advantage of the children of this country. Further significant initiatives of the PHO Chapter particularly in the organization of the SIOP Asia Congress in 2002, the SIOP Global Congress in 2007 and the launch of limited duration Fellowship training by the PHO chapter in collaboration with the parent body (IAP) & the National Board of Examinations, MOHFW, New Delhi in 2007, ultimately resulted in the establishment of the Indian National Pediatric Oncology Group (INPOG) in 2008 whose primary aim was to carry out collaborative research nationwide to answer specific questions that were relevant for our children in our country. After intense discussion, the PHO Chapter nominated Drs. Anupam Sachdeva and Purna Kurkure to lead this initiative.

2008 – 2021: Establishment and progress

A very enthusiastic gathering of about 30 pediatric oncologists discussed and formulated steps to establish a national network for pooling efforts in the management of children with cancer during the 1st Business Meeting, at New Delhi in August 2008 by initiating disease specific epidemiological studies in the year ahead.

The 2nd and 3rd business meeting of the newly formed body were both held in New Delhi in August 2010 and August 2013 respectively. Formalities regarding the registration and constitution of INPOG and the formulation of a Memorandum of Understanding (MOU) between the PHO Chapter and INPOG were proposed and thoroughly discussed during these meetings which were officially sponsored by the Indian Council of Medical Research (ICMR). However, due to a myriad of administrative and financial bottlenecks, progress was slow and hardly any headway was made in this direction.

To earnestly push forward the above mentioned agenda and energize the effort, the 4th INPOG Business meeting was organized by Drs. ATK Rau (Chair), Amita Trehan (Hon. Secretary) and Santanu Sen (LOC Chair) on 19 July 2014 under the aegis of the PHO Chapter in the Kokilaben Dhirubai Ambani Hospital in Mumbai. Combined with a scientific discussion on collaborative research and the 1st ever Mid-term CME of the Chapter, the meeting aggressively sought to re-establish the failing fledgling effort of collaborative research in pediatric oncology by involving as many of the stake holders as possible. 27 members from all over the country attended the conclave and are listed below: Dr. Anupam Sachdeva (Delhi), Dr. Bharat Agarwal (Mumbai), Dr. Purna Kurkure (Mumbai), Dr. L Appaji (Bangalore), Dr. P Kusumakumari (Trivandrum), Dr. Jagdish Chandra (Delhi), Dr. Mamta Manglani (Mumbai), Dr. Praveen Sobti Ludhiana), Dr. ATK Rau (Bangalore), Dr. Madhusmita Sengupta (Kolkata), Dr. Gaurav Narula (Mumbai), Dr. Satya Yadav (Delhi), Dr. Shailesh Kanvinde (Pune), Dr. Tulika Seth (Delhi), Dr. Sameer Bakhshi 9Delhi), Dr. Gauri Kapoor (Delhi), Dr. AmitaTrehan (Chandigarh), Dr. Amita Mahajan (Delhi), Dr. Leni Mathews (Vellore), Dr. Deepa Trivedi (Delhi), Dr. Siddharth Laskar (Mumbai), Dr. Sangeeta Mudaliar (Mumbai), Dr. Archana Swami (Mumbai), Dr Manas Kalra (Delhi), Dr. Anand Prakash (Bangalore) and Dr. Vibha Bafna (Pune). At this meeting, it was resolved to appoint new leads for this initiative and implement all pending decisions taken in regard to formally establishing this research wing of the PHO Chapter. Accordingly, Dr. Anupam Sachdeva, Chair and Dr. Purna Kurkure, Co - chair stepped down from their respective positions and were replaced by a new executive committee duly elected later during PHOCON 2014 in Chennai, for a tenure of 3 years from 2015 to 2018 which had the following as office bearers:

Chairperson: Dr. Sameer Bakhshi (Delhi), Co- chairperson: Dr. Amita Trehan (Chandigarh), Hon Secretary: Dr. Girish Chinnaswamy (Mumbai), Hon Treasurer: Dr. Brijesh Arora (Mumbai). Executive committee: Dr. Deepak Bansal (Chandigarh), Dr. R. Venkatraman (Chennai), Dr. Tulika Seth (Delhi), Dr. Ramandeep Arora (Delhi).

During the scientific proceedings of the INPOG during this conclave, six working groups of INPOG were formed as under: Acute Leukemia, Wilms Tumor, Rhabdomyosarcoma, Non Hodgkins Lymphoma, Hodgkins Lymphoma and Neuroblastoma. The chairs of each group were identified and a further 6-7 members joined each working group. Other PHO chapter members were invited to join and contribute at these working groups as well. Dr. Vaskar Saha (Kolkata) proposed that the already active “ALL group” under the banner of the “ICICLE” be merged with INPOG as the “ALL Working Group” of INPOG. All the members stressed upon the need for INPOG to become self - sufficient with regards to funds for various projects and in this regard, it was suggested that the new executive committee explore the possibility of obtaining funds for the purpose from Department of Science and Technology, the Department of Biotechnology, Govt. of India and the ICMR.

The 5th Business Meeting of INPOG was held in Chennai in November 2014 under the leadership of Dr. Sameer Bakhshi during which a further 14 INPOG disease (working) groups were established. Their Chairs were nominated and duties were duly assigned to each (Fig 1 : Disease Group Chairs). Members for each of the working groups were enrolled from among the PHO Chapter fraternity and steps to initiate and formalize the studies were laid down (Fig 2 : Study Roadmap)

Thereafter, the 6th to the 15th business meetings of the INPOG, under the aegis of the PHO Chapter, were held at various venues along with the mid- Term CME’s and PHOCON from 2015 to 2019 on a regular basis. The first quarterly INPOG Newsletter (Vol 1; Issue 1, Jan to Mar 2015) was released in January 2015 and since then these newsletters have been published regularly with the 10th edition released last in 2024. (See the Newsletter tab for more details)

In 2018 a new Executive board of the INPOG was elected during the GBM of the PHO Chapter for a further term of three years from 2018 to 2020: The board comprised of: Dr. S. D. Banavali (Mumbai), Chair, Dr. Revathi Raj (Chennai) - Co – Chair, Dr. Ramandeep Singh Arora (Delhi), Secretary, Executive members: Dr. Amita Mahajan (Delhi), Dr. Girish Chinnaswamy (Mumbai), Dr. Nita Radhakrishnan (Delhi) and Dr. Nishant Verma (Lucknow). The term of this team was extended by a further year until December 2021, due to unforeseen circumstances (the Covid -19 pandemic).

In 2019, at the PHOCON in Varanasi, during the GBM of the PHO Chapter, it was decided to add benign hematology into the research group and authorize INPOG to register itself as a Section 8 company, albeit under safeguards, with the express purpose of collecting funds from the public for scientific research. Accordingly three benign Haematology subcommittees were added in 2020 and the name of the wing was changed to “Indian National Paediatric Haematology Oncology group” or INPHOG. Efforts were initiated to transform INPOG into a Section 8 entity. By now (2020), the INPOG had achieved unprecedented success with 31 studies (7 completed recruitment; 15 recruiting; 2 already completed recruitment, and 7 in development) under 111 centres nationwide and 224 members in various working groups having participated in the collaborative effort for the first time in the country. 10,000 odd patients had been recruited by now and a further 7000 had been identified as potential subjects for other studies. The data from these studies resulted in many international and national publications of which 7 had been published under the banner of INPOG itself.

2021 – 2023: Consolidation

By the middle of 2021, 229 members were working under the INPHOG collective and a further 29 studies had been registered of which 10 had been completed (pending writing), 14 were ongoing, recruitment had begun in one and four were in the initial stages of development. On the 22nd of December 2021, INPHOG RESEARCH FOUNDATION was finally registered as Section 8 Company with the blessings of the PHO Chapter. On 18th Nov 2022 during PHOCON, New Delhi, the first Annual General Meeting of the INPHOG was held with 28 member institutions being present. A Board of Directors was constituted with an Advisory Board to supervise the working. The website (www.inphog.org) and logo of the INPHOG was also launched on this day. Following the registration of INPHOG as a Research Foundation and a Section 8 Company and based on the AOA & MOA, a new Executive was installed with the following 4 Directors: Dr. Ramandeep Arora (Delhi), Dr Amita Mahajan (Delhi), Dr Gauri Kapoor (Delhi) and Dr Revathi Raj (Chennai) which is where the matter stands today.

The continuing collaboration between the PHO Chapter and INPHOG, serves to highlight the extremely mature and professional approach of the leadership of either entity. This will only serve the children of this country better. The Biannual Scientific meetings & the AGM of INPHOG continue to be held on the platforms established by the PHO Chapter: ie the Mid-term CME of the PHO Chapter & the Annual PHOCON. The PHO Chapter and INPHOG call upon each other to carry on with this legacy of “collaboration,” established slowly but steadily over the past 30 years by the pediatric Hematology - Oncology community of this country. It’s definitely a reason to cherish and celebrate our achievements and we hope that in the days ahead this bond and the success grows only stronger and bigger.

For further information, visit INPHOG website at - https://www.inphog.org/Default