Our Pediatric Cancer Research Institute, recognized as a Scientific Industrial Research Organisation (SIRO) by the Department of Scientific and Industrial Research, Government of India, aims to improve childhood cancer care in India by promoting, supporting and undertaking research to improve survival and other outcomes of children with cancer in India.
CanKids Pediatric Cancer Research Institute (CK PCRI) formerly known as Quality Care Research and Impact (QCRI) was set up as an operational unit at CanKids in the year of 2013. We promote and support research through our partnerships, advocating, sponsoring, providing manpower, facilitating capacity building and training materials. Through our projects, we focus on access to care, outcomes research, Shared care models, filling gaps by formulating childhood cancer policy, one cancer at a time focusing on disease specific interventions and enabling multi-centre, institutional, patient-led research, health systems and policy dimensions.
Aligning with its vision of attaining global health standards for the pediatric cancer patients, and improving patient outcomes CanKids supports research protocols, as sponsor, participant and promotes awareness of research within the organization and with other Patient Advocacy Groups (PAG). As a PAG, it provides financial, social, psychological support, along with patient navigation, education and treatment support. CanKids is committed to ensure knowledge translation of all research into practice and policy thereby benefitting Pediatric cancer children. To safeguard the dignity, rights, safety, and well-being of all research participants it has set up its own first-of-its-kind patient-led organization Ethics Committee.
Aligning with its vision of attaining global health standards for the pediatric cancer patients, and improving patient outcomes CanKids supports research protocols, as sponsor, participant and promotes awareness of research within the organization and with other Patient Advocacy Groups (PAG). As a PAG, it provides financial, social, psychological support, along with patient navigation, education and treatment support. CanKids is committed to ensure knowledge translation of all research into practice and policy thereby benefitting Pediatric cancer children. To safeguard the dignity, rights, safety, and well-being of all research participants it has set up its own first-of-its-kind patient-led organization Ethics Committee.
Areas of Research :
Access to care and Epidemiology
To identify the gaps to access to care of childhood cancer patients care.
Disease & Intervention specific
Disease specific protocols to know the burden of a particular type of cancer. Disease specific project investigates the different types of cancer and drive better survival & other outcomes for that specific cancer.
Social support, continuity of care & quality of life
Research to drive improvement in patient centered care and to measure quality of care among childhood cancer patients/caregivers through research studies.
Advocacy
Advocacy with the intention of providing evidence & arguments that can be used to support the cause of childhood cancer.
Building capacity for research & Practice Partnership
Collaborative working and research in the pediatric oncology & the Patient Advocacy Groups spaces to improve programs outcomes, program, services and system.
Note: The patient support we provide for drugs/ diagnostics/ therapies / medical equipment and other holistic care to children with cancer across 141 hospitals we partner including ones where the research projects are being conducted , enables access to care , prevents abandonment and that families are able to participate in research.
Thank you for your partnership and support!
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Cankids Pediatric Cancer Research Institute (PCRI) promotes, sponsors and supports Clinical Trial for a patient, cancer registries and we work under several thematic area of research and conduct Epidemiological research continuity of care (Palliative & survivorship care) and quality of life, Evidence based research, knowledge translation through advocacy and building capacity of Patient Advocacy Groups, Civil Society Organizations and institutional research & Practice Partnerships.
Here are some of the research projects we supported / sponsored/ promoted :
Accessing Childhood CancEr ServiceS in INDIA (ACCESS INDIA STUDY)
- Multi-centre prospective cross-sectional study
- Aim: to investigate the pathways of access to care for children newly diagnosed with cancer in North India and East India, as well as the factors associated with these pathways.
- Identify how these pathways impact the child's disease and outcome.
Societal outcomes:
- Better understanding of access barriers, improved healthcare infrastructure, reduced disparities, enhanced treatment outcomes, informed policymaking, and increased awareness and advocacy.
- Outcomes collectively aim to improve the overall care for children with cancer in these regions
- Serve as a model for addressing similar challenges in other low and middle-income countries.
- Aim: to investigate the pathways of access to care for children newly diagnosed with cancer in North India and East India, as well as the factors associated with these pathways.
- Identify how these pathways impact the child's disease and outcome.
Societal outcomes:
- Better understanding of access barriers, improved healthcare infrastructure, reduced disparities, enhanced treatment outcomes, informed policymaking, and increased awareness and advocacy.
- Outcomes collectively aim to improve the overall care for children with cancer in these regions
- Serve as a model for addressing similar challenges in other low and middle-income countries.
Collaborative Protocol for Newly Diagnosed Indian Childhood Hodgkin Lymphoma patients
Aim:
- To determine the event free (by both, including and censoring abandonment of treatment) and overall survival of children with Hodgkin lymphoma in India when treated with a risk-stratified ABVD based therapeutic strategy.
- To establish the response rates at specified time-points of children with Hodgkin lymphoma in India when treated with a risk-stratified ABVD based therapeutic strategy.
Societal outcomes:
- This study ensures that the stage of your child’s disease and risk group category is properly assessed; that your child’s treatment is effectively given, according to a standard protocol; that the follow-up of your child is correctly done after completing the treatment. The long-term outcomes of this study will help doctors improve the treatment of patients in the future.
- To determine the event free (by both, including and censoring abandonment of treatment) and overall survival of children with Hodgkin lymphoma in India when treated with a risk-stratified ABVD based therapeutic strategy.
- To establish the response rates at specified time-points of children with Hodgkin lymphoma in India when treated with a risk-stratified ABVD based therapeutic strategy.
Societal outcomes:
- This study ensures that the stage of your child’s disease and risk group category is properly assessed; that your child’s treatment is effectively given, according to a standard protocol; that the follow-up of your child is correctly done after completing the treatment. The long-term outcomes of this study will help doctors improve the treatment of patients in the future.
Prospective Collaborative Study for Newly Diagnosed Patients with Retinoblastoma in India
Aims :
To study the epidemiological and clinical features of retinoblastoma in India, and to evaluate outcomes for patients in all groups and stages following a standardized strategy.
Societal outcomes :
- The study prospectively studies the epidemiological and clinical features of retinoblastoma in India.
- The study evaluates event free and overall survival rates and ocular salvage as per a standardized treatment strategy.
- The study helps understand the reasons for delay in diagnosis, leading to advanced stage presentation in India.
- The study helps understand the reasons for and to limit treatment abandonment.
- The study provides an assessment of the visual outcomes of patients who achieved ocular salvage.
To study the epidemiological and clinical features of retinoblastoma in India, and to evaluate outcomes for patients in all groups and stages following a standardized strategy.
Societal outcomes :
- The study prospectively studies the epidemiological and clinical features of retinoblastoma in India.
- The study evaluates event free and overall survival rates and ocular salvage as per a standardized treatment strategy.
- The study helps understand the reasons for delay in diagnosis, leading to advanced stage presentation in India.
- The study helps understand the reasons for and to limit treatment abandonment.
- The study provides an assessment of the visual outcomes of patients who achieved ocular salvage.
Girl Childhood Cancer Patient and Survivors Study
- By focusing specifically on girl childhood cancer patients and survivors.
- Recognizes and highlights gender disparities that may exist in access to care, treatment outcomes, and survivorship experiences.
- This recognition is crucial for acknowledging and addressing gender bias.
- Understanding the unique needs and challenges of girl childhood cancer patients can lead to more tailored and gender-sensitive healthcare interventions.
Societal Outcome:
- Advocacy tools to raise awareness about gender bias in Pediatric cancer care and survivorship.
- Mobilize advocacy efforts aimed at reducing disparities and promoting gender equality in healthcare access and outcomes. With the help of this study, we can potentially address and mitigate gender bias within the context of childhood cancer care and survivorship.
- Outcomes collectively contribute to – a more equitable and just healthcare system for all children, regardless of gender.
- Recognizes and highlights gender disparities that may exist in access to care, treatment outcomes, and survivorship experiences.
- This recognition is crucial for acknowledging and addressing gender bias.
- Understanding the unique needs and challenges of girl childhood cancer patients can lead to more tailored and gender-sensitive healthcare interventions.
Societal Outcome:
- Advocacy tools to raise awareness about gender bias in Pediatric cancer care and survivorship.
- Mobilize advocacy efforts aimed at reducing disparities and promoting gender equality in healthcare access and outcomes. With the help of this study, we can potentially address and mitigate gender bias within the context of childhood cancer care and survivorship.
- Outcomes collectively contribute to – a more equitable and just healthcare system for all children, regardless of gender.
Anxiety among adolescent cancer patients & caregivers receiving treatment care & support during COVID 19 pandemic in India
- Improved mental health awareness.
- Reduced stigma, policy development, enhanced quality of life, and support for vulnerable communities.
- It contributes to a more compassionate and supportive society that recognizes and addresses the mental health needs of individuals facing serious health challenges.
- Reduced stigma, policy development, enhanced quality of life, and support for vulnerable communities.
- It contributes to a more compassionate and supportive society that recognizes and addresses the mental health needs of individuals facing serious health challenges.
Our Publications
- Sharma A, Negi E, Arora, B, Pradhan D, Khurana M, Bagai P, Arora RS. A Survey of Nutritional Practices for Children with Cancer in India. Indian J Cancer 2015 Apr-Jun;52(2):191-3.
- Arora RS, Prabha S, Roy Moulik N, Bagai P. A survey of immunization practices in children with cancer in India. PediatrHematolOncol J 2016 May;1(1):2-5.
- Arora PR, Mishra R, Mehrotra S, Mittal C, Sharma S, Bagai P, Arora RS. Pilot initiative in India to explore the gonadal function and fertility outcomes of a cohort of childhood cancer survivors. J Hum ReprodSci 2016 Apr-Jun;9(2):90-3.
- Ramandeep Singh Arora, Ankit Taluja, Puneet Rana Arora, Poonam Bagai, Rachna Seth, Gauri Kapoor. Delivery of services to childhood cancer survivors in India: A national survey January 2017.Pediatric Hematology Oncology Journal 2(2).
- Amita Mahajan, Ramandeep Singh Arora, Veronique Dinand et.al. First report on newly diagnosed Indian childhood Hodgkin lymphoma patients treated on a risk-stratified response-based collaborative protocol (InPOG-Hl-15-01).January 2017.Pediatric Hematology Oncology Journal 2(2).
- Stephanie Mardakis, Ramandeep S. Arora, Sameer Bakhshi, Ashima Arora, Huma Anis, Argerie Tsimicalis, A Qualitative Study of the Costs Experienced by Caregivers of Children Being Treated for Cancer in New Delhi, India. Cancer Reports. 2019 Jun;2(3):e1149.
- Neha Faruqui, Alexandra Martiniuk, Abhishek Sharma, Chanchal Sharma, Bhumika Rathore, Ramandeep Singh Arora, Rohina Joshi, Evaluating access to essential medicines for treating childhood cancers in New Delhi, India: a medicines availability and prices study. BMJ global health. 2019 Apr 1;4(2):e001379.
- Shivani Ahuja, Argerie Tsimicalis, Sara Lederman, Poonam Bagai, Alexandra Martiniuk, Sandhya Srinivas, Ramandeep Singh Arora, A Pilot Study to Determine the Out-of-pocket Expenditures by Families of Children Being Treated for Cancer at Public Hospitals in New Delhi, India. Psycho-oncology. 2019;28:1349-53.
- Faruqui N, Joshi R, Martiniuk A, Lowe J, Arora R, Anis H, Kalra M, Bakhshi S, Mishra A, Santa A, Sinha S, Siddaiahgari S, Seth R, Bernays S. A health care labyrinth: perspectives of caregivers on the journey to accessing timely cancer diagnosis and treatment for children in India. BMC Public Health. 2019 Dec 2;19(1):1613. https://doi: 10.1186/s12889-019-7911-x. PMID: 31791308; PMCID: PMC6889559.
- Rashmi Kumari, Akshay Tiwari, Ishita Maji, Haresh Gupta, Poonam Bagai, Mohini Daljeet Singh, Ramandeep Singh Arora Original Article, Volume 6, Issue 1, JBST January-April 2020 Facilitating Timely Access to Highly Specialized Surgery for Children with Extremity Bone and Soft-Tissue Sarcomas in North and Central India.
- Arora RS et al., InPOG-HL-15-01 - Challenges and lessons learnt in setting up the first collaborative multicentreprospective clinical trial in childhood cancer in India, Pediatric Hematology Oncology Journal, https://doi.org/10.1016/j.phoj.2020.02.001.
- S Ahuja, J Sharma, S Gupta S Bakhshi, R Seth, A Singh, P Bagai, RS Arora. Patient tracking during treatment of children with cancer in India – An exploratory study. Cancer Reports.2021; e1359. https://doi.org/10.1002/cnr2.1359.
- Mahajan A, Singh M, Bakhshi S, Jain S, Radhakrishnan V, Verma N, Seth R, Arora RS, Dinand V, Kalra M, Mandal P, Kapoor G, Sajid M, Thulkar S, Arora A, Taluja A, Chandra J. Treating early-stage Hodgkin lymphoma in resource-limited settings: InPOG-HL-15-01 experience. Pediatr Blood Cancer. 2021 Oct;68(10):e29219. https://doi.org/10.1002/pbc.29219. Epub 2021 Jul 22. PMID: 34291860.
