Andrea Lo, Nazira Mamdani Brain Tumour Research Fellow, BC Cancer, Vancouver, BC and Princess Margaret Hospital, Toronto, ON.
Project Title: Treatment approaches, outcomes and complications in adolescents and young adults of intracranial germ cell tumours
Intracranial germ cell tumours (IGCT) affect both children and adults. The treatment of IGCT in adolescents and young adults (AYA) is extrapolated from literature on children, due to the small proportion of AYA in most studies. Treatment of IGCT involves radiotherapy (RT) alone or a combination of RT and chemotherapy. RT is associated with significant late complications. Chemotherapy alone, however is insufficient due to high rates of disease recurrence. The reduction of the dose and volume of RT is being investigated in studies that are largely focused on children. On the other hand, published and ongoing studies to guide management of IGCT in AYA are scarce, and therefore, treatment patterns in this group are variable.
The first part of this study is a national survey of physicians to assess treatment patterns of IGCT in AYA. Secondly, the medical records of AYA treated for IGCT in Toronto and British Columbia will be reviewed to determine outcomes and complications according to treatment approach. Lastly, survivors will participate in a prospective evaluation of long-term complications and quality of life. The results will provide invaluable guidance in the management of ICGT in AYA, and aid in development of standard treatment guidelines for this population.
Andrea Lo describes what the research means to her:
“Being awarded the Nazira Mamdani Brain Tumour Research Fellowship means I have been generously granted the opportunity to grow and develop as a clinician investigator. I am passionate about research, and I look forward to making it a central part of my long-term career. This funding will support a study that will improve our understanding of intracranial germ cell tumours in adolescents and young adults, and will be an important step towards optimizing treatment and quality of life for patients affected by this disease. I am sincerely grateful to the family of Nazira Mamdani and the Brain Tumour Foundation of Canada for their contribution towards advancing medical knowledge and improving the lives of those affected by brain tumours.”
From the first report:
The data collection and analysis of Part I (Canadian Patterns of Practice) and Part II (Outcomes and complications in the management of intracranial germ cell tumours) have been completed. Results have been submitted as abstracts to several conferences and presented as both poster and oral presentations (see report). Manuscripts for Part I and Part II will be written over the next 3 months. Part III of the study will be started next month and completed over the ensuing 14-15 months, including data collection, analysis and publication. Read the first year report (PDF).
From the final report, January 2019:
This research study closely investigated the treatment approaches, outcomes and quality of life of adolescents and young adults (AYA) with intracranial germ cell tumours (IGCT), a disease that is categorized into germinoma and non-germinomatous germ cell tumours (NGGCT). One-hundred nineteen Canadian oncologists who treat brain tumours completed our survey which showed that there was significant uncertainty and variability in the management of two hypothetical adolescent patients with IGCT. Read more from the final report (PDF)
This Brain Tumour Research Fellowship was established in 2014 in memory of Nazira Mamdani.
Nazira Mamdani was an avid community volunteer and activist. After graduating from the University of Alberta with a Bachelor of Science in Nursing and obtaining an additional certification in oncology nursing in 1991, she started her career at the Canadian Cancer Society and later established herself as an independent health consultant specializing in developing teaching resources and planning programs which have had a significant impact in the lives of many Albertans.
Some of Nazira’s accomplishments include the planning for “Best Beginnings” designed for pregnant teenagers, and the smoking regulations imposed on hospital campus for staff. In 1997, she led a team to organize a conference on women’s health in Calgary, which has now become the annual Women and Wellness Expo.
In November 2004 when her three children were all younger than 3 years old, Nazira was diagnosed with an oligioastrocytoma brain tumour. After a partial resection in 2005, Nazira fought back and became a volunteer with the Brain Tumour Foundation of Canada.
The Nazira Mamdani Fellowship was established in her memory by her family and friends.
Help build Canada’s brain tumour research community by funding a Brain Tumour Research Fellowship. Contact us at 1-800-265-5106.