ANNUAL REPORT

Transcription

1 ANNUAL REPORT

2 Contents 1. Overview 2. Our Pillars 3. Altruistic Leaders 4. Progress 5. Development Programs 6. Volunteer of the year 2

3 Overview Bharat stem cell registry (BSCR) aims to build a large and diversified database of Haematopoietic stem cell donors in order to help patients suffering from life threatening blood disorders. In India, thousands of people are diagnosed with critical blood diseases for which a cure exists, but unfortunately this cure is out of reach for a common man. The primary reason behind this is lack of a database with enough stem cell donors registered on it. Other reasons such as the monetary aspects and timely prognosis, also refrain patients from receiving the right treatment. BSCR is an initiative to make the treatment of stem cell transplant available to those in need by helping them find a donor. Finding a potential donor match is rare. We aim to convert this rare event into a frequent event. 3

4 Mission To eradicate from society the fear of blood disorders Vision To build an extensive & diversified data pool of voluntary stem cell donors to provide a ready solution to all blood disorder sufferers 4

5 Our Pillars Ms. Pooja Kukreja Pooja has intricate knowledge of genetics and spends more hours at BSCr than at home. In a short span of two years, she has been able to earn the love, affection, and respect from medical doctors assisting blood cancer patients Mr. Vikash Ch. Mishra He has been BSCr for the past two years. He can handle every aspect of work and is a one stop back up for each and every activity performed by BSCr. Mr. Ashish Sharma He is working as Junior Research Scientist in Bharat Stem Cell for the last 2 years. He is trying to find what he wants to do in life. Mr. Naveen Vashisht He is the youngest in the group and like BSCr has dreams of making it big. He wants to be a renowned scientist some day and therefore, he is under strict tutelage of Dr Vimarsh Raina. 5

6 Our Pillars Ms. Hina Solanki Ms. Solanki is a postgraduate in Biotechnology with 5 years of teaching experience. She is a dynamic person with ability to handle different departments with equal efficiency. 6

7 Altruistic Leaders Dr. Vimarsh Raina Director Lab Services & Transfusion Medicine at Medanta-The medicity Mr. Kapil Gupta Partner at Kaul Kapil & Co. Chartered Acountant Dr. Aseem Kumar Tiwari Senior Consultant at Medanta- the medicity Dr Pranav Dorwal Dr. Apeksha Tiwari A practicing dental surgeon in UK, Apeksha is a passionate artist by temperament. She is the emotion and soul of BSCr passionately infusing the value of human life among BSCr team. She joined BSCr during the convalescence from a kidney transplant. Instead of spending time on a hospital bed recovering post her surgery, she choose to devote her time and energy to the development of BSCr. She has been able to get help for a 10 year old blood cancer child (Siddhant) from an unrelated donor. 7

8 Progress Department of patient services demonstrated steady growth in the year Assisted on 5 stem cell transplants. In four of these transplant cases, stem cell donors were from international registries and hence required import of stem cell product to India. Due to limited availability of donors in our database, only in one of the cases, a donor was found in genebandhu s database. Table 1. Details of patient connected across border Patient s Name Date of transplant Disease Country of Donor MS. P September 2013 Acute Myeloid Leukemia ZKRD, Germany Mr. A S October 2013 Acute lymphoid ZKRD, Germany leukemia Mr. M I November 2013 Mylofibrosis ZKRD, Germany Mr. I C March 2014 Acute myeloid leukemia DKMS, Germany Conducted 117 MUD searches using both genebandhu s database and globally well known databases. 8

9 Progress First MUD transplant assisted was with RGCI hospital Second MUD transplant assisted with Sahyadri Super Speciality hospital Pune 9

10 Progress The department of Patient Services increased the probability of finding a potential donor by collaborating with international registries o UK Cooperative International Donor Agreement An agreement was signed between Anthony Nolan and Bharat Stem Cell Registry, to facilitate the searching of donors in the UK registry. o HAP-E Search Access An agreement with DKMS Germany for penetration into their registry to find matched saviors 10

11 Progress Donor Build up Department witnessed a small growth in the number of donors registered. Awareness and recruitment drives were conducted at various places including schools and colleges. The table below provides the details of the number of donors recruited during the year Date Place of Drive No. of donors 3/4/2013 ROTARACT- Hyderabad 3 19/04/2013 INTEGRAPH-CSR 3 3/5/2013 UNKNOWN 3 20/12/2013 ROTARACT- Hyderabad 3 28/12/2013 GURU NANAK COLLEGE 3 7/2/2014 RRS COLLEGE 57 NOT KNOWN BHOPAL 67 13/12/2013 DELHI FRIENDS COLONY 80 21/12/2013 MUMBAI 50 23/02/2014 A B C MONTESSORY SCHOOL 12 (FARIDABAD) 20/02/2014 JAMMU /02/2014 LOINS CLUB (DELHI) 2 27/02/2014 JALANDHAR 20 NOT KNOWN RAJENDER NAGAR (DELHI) 16 NOT KNOWN AMITY UNIVERSITY (NOIDA) 0 5/1/2014 YOGA CLASS (NEW DELHI) 4 6/1/2014 FORTIS GURGAON 60 11

12 Progress Awareness and recruitment drive in Montessori Public School, Faridabad on the day of parent teacher meet. Focus of the camp was to create awareness among the young kids, the parents and the teachers. We addressed all the queries arising in the crowds mind and therefore made them fully confident about the cause we are striving to achieve. A lot to parents enthusiastically got registered. 12

13 Progress The Donor Build up Department also helped in conducting family specific donor drives. Family members of the patient often express willingness to become a donor for their family member in need or for any other patient. Since they closely feel the pain associated, they are willing to donate life saving magical seeds. o A ten years old child suffering from ALL (Acute Lymphoid Leukemia) wasn t able to find a potential donor. His initial search reflected a match in Germany but unfortunately the donor denied. He found a second donor in Germany but due to certain unfortunate reasons the transplant couldn t be materialized. The family approached Bharat Stem Cell Registry to conduct a family drive and search a savior within their family. The destiny has its own way of molding things; he did not match to any of his family members. 4/6 was the maximum match ratio observed. After some time he finally found a match in Singapore and underwent the transplant. o We conducted a family drive for another patient suffering from Leukemia. 80 members from New Delhi, Friends Colony and 50 members from Mumbai got registered as donors in hope to save the life of their beloved. He finally found a donor and is living his dreams. 13

14 Progress To store consent forms, data of rapidly increasing donors and to ensure appropriate storage of records, maintain the efficient functioning and development of our registry, BSCr shifted its head office from a small room in Nehru Place to a reasonably large space in South Delhi. 14

15 Progress Our team helped Rajiv Gandhi Cancer Institute to obtain a recognition certificate from NMDP, be the match to facilitate the transplant between an Indian Donor and American Patient or vice versa. 15

16 Development Programs BSCr helped Rajiv Gandhi Cancer Institute to obtain a membership of NMDP as mentioned above. At the time of registration of Transplant center, NMDP trains one personnel from the center to ensure accurate and seemless transplant care to the patient. At our request, NMDP agreed to train two personnel in a special gesture towards genebandhu and Rajiv Gandhi Cancer Institute and Research center (RGCI). Dr. Aseem K. Tiwari and Ms. Pooja Kukreja were invited to Minnesota for three days of training. It was a well designed and comprehensive training that they received at NMDP headquarters. Several transplant with reasonably good outcome at RGCI, since then are a testimony of the training imparted at NMDP. 16

17 Development Programs Initial steps into the world of registries were supported by numerous trainings programs. Our team participated in the DKMS online training to successfully carry out search in their database. One of our teammates went to visit ZKRD (registry in Germany) to get a deeper insight into the functioning of a voluntary stem cells donor registry. ZKRD VISIT 17

18 Development Programs We participitated in South Asian Association of Transfusion Medicine. Our team members enthusiastically took part in the conference and workshop, and demonstrated an outstanding performance. Topics presented by our team Topic Presenter Introduction on the program and welcome Messages on the cell surface Serology based typing of Red and White cells Dr Raina Dr. Kuruppu Ms Jyoti & Ms Simmi Peeping inside the nucleus DNA extraction and its quantification Dr. Dharmender Mr. Avinash Negi & Ms. Pooja Kukreja Decoding the Double Helix Master mix prep, loading SSP tray and PCR Deciphering the code Gel loading and analysis Dr. Dolly Daniel Dr. Dharmeder jain & Mr. Ashish Dr. Vimarsh Raina Ms Neetu Tyagi & Mr. Vikas DSA cross match on Luminex- Mr. Naveen Kumar Playing god- Applications of DNA typing Dr. Divye Chabbra Playing God- Matched Unrelated Donor Transplant- Asian Perpective Dr. Ashok Vaid Take Home Message & Vote of Thanks Dr. Aseem K Tiwari. 18

19 Development Programs Our primary goal was to increase your understanding of relationship between transfusion and transplantation and introduce Matched Unrelated Donor (MUD) transplants assisted by the Non Government Organization (NGO)-Bharat Stem Cell Registry. South Asian Association of Transfusion Medicine 19

20 Volunteer of the Year MR. SANJAY BHANDARI The person who never said No He helped us in designing letter heads, awareness and promotional material in a professional manner. He did an excellent job, adding an eye catching effect to all our printing material by dedicating his time and energy. 20

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