NuGenA

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Breast and ovarian cancers are the highest and the deadliest form of women’s cancer in India, respectively and a significant proportion have a hereditary background (HBOC) which impact on screening and prevention strategies. Health services in developed countries have well-coordinated regional genetic counselling services; However, these models are difficult to be implemented in low- middle income countries with lack of adequately trained manpower and poor community outreach. Often hereditary cancers are missed out due to social stigma and lack of national cancer registries.

Previous and ongoing work done by the Kolkata Gynecological Oncology Trials and Translational Research Group (KolGo Trg) piloted a study in India, where a research nurse was trained in genetic counselling following nurse led counseling, higher number of patients and their relatives identified their risks and were encouraged to get themselves tested. Patient-satisfaction/follow up rate and acceptance were higher as patients could spend more time with the nurses. However, uptake of genetic testing for several at risk family members was still low.

Through the NuGenA study, we propose to extend this work to show that compared to hospital based and opportunistic genetic testing, Nurses (all tiers- primary to tertiary care employed in the existing health care services) after adequate training can be an excellent link to motivate patient-public initiatives and develop community-based awareness, increasing uptake of genetic counselling, testing and risk reduction strategies.

Since 2014, the International Innovation Grants have provided funding in support of novel and innovative projects with the potential to advance cancer control in low- and middle-income countries. NuGenA study from KolGOTrg has been awarded this prestigious award to develop this innovative initiative in India.

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Charter Champion: NuGenA Study has received the Charter Champion award by the World Ovarian Cancer Coalition which seeks to improve survival and quality of life for women diagnosed with ovarian cancer through the implementation of six Global Goals. The Charter builds on the Coalition’s landmark 2018 Every Woman Study™, and was formally launched at the Presidential Plenary of the International Gynecologic Cancer Society xDigital Annual Global Meeting on 12 September 2020. Press release and highlights can be found here: https://youtu.be/RnANb-D_h5c

Global Ovarian Cancer Charter Champion Click here

NuGenA (Nurse led Genetic counselling in improving awareness and prevention of hereditary breast and ovarian cancers in India) Click here