A clinical trial is an important element of research in the field of medicine and science. Before any treatment protocol, or medicine or any practice related to the patient is brought into mainstream practice, it is essential that the trials have proved it's impact.
The meeting was organized with the intention of developing synergy between the various centers involved in the transplantation for thalassemia as part of the Sankalp-Cure2Children Thalassemia BMT Network. The following organizations were represented in the meeting:
It was an incredible experience working in the Bone Marrow Transplant unit of People Tree Hospital -Sankalp collaboration. I absolutely fell in love with the meticulous nature and detailed organization in the system. It gives an opportunity to the physicians to remotely monitor patients with able assistance from the nurses.
I would like to mention a few incidents which have made a lasting impression on me.
We read somewhere - "Perseverance is not a long race; it is many short races one after the other." Anushree personified it.
Bone marrow transplantation is becoming an increasingly acceptable curative option for patients suffering from thalassemia. This coincides with improved access to care and management of thalassemia. There is a need for a measure to be available for the patient families, support organisations, government and donors to make a truly informed choice on whether or not the option of a bone marrow transplantation of a particular kind at a particular centre is the best option for the patient. Overall survival post transplant and disease free survival are the generally used measures.
There is a time, when in life some families face lot of difficulties, struggle a lot, and then, they came over of hard time. Daiyaan's family is a perfect example of this.
Five years back, on 14th November 2011, with the cutting of a ribbon the Thalassemia Day Care Centre at Indira Gandhi Institute of Child Health was formally inaugurated. A small gift of children's day, a step in the direction of health, well-being and fulfilment of dreams for the little ones.
This year a young couple with 11 month old baby girl named as Prachi Bhanushali contacted us for help with Bone Marrow Transplantation.
It was more than a year back when we a family who had two little girls suffering from thalassemia from Afghanistan approached Cure2Children Foundation for help with HLA typing. The family was overjoyed to find that both the girls had a match. The father of the girls is a driver and could not have afforded transplantation. Zwan family charities, Kabul decided to help the family and approached Dr Lawrence Faulkner for help with the transplantation.
Normally, when you tell a family which has a child who suffers from thalassemia, that they have a match, at least for one moment you expect to see a smile. This was not the case when we broke the news to five-year-old Nirmitha's family. She was detected with thalassemia within the first year of her birth and ever since she was dependent on monthly blood transfusions. Though they did come for the follow-up meetings, the expression on their face did not suggest that they were willing to go for the transplant.
Asia Pacific Bone Marrow Transplantation Meet was organised at Singapore from 28-30 October 2016. The Sankalp-Cure2Children Network was happy to have 6 of our posters selected to be presented at the meeting. In-line of our commitment to transparency, innovation and quality we continue to scientifically analyse and share our work.
How do we offer transplants to more children?
How do we make transplantations safer?
How to we ensure that the best quality is delivered at the least cost?
How to we setup an environment which enables everybody involved to achieve personal and professional excellence?
