25-01-2019 From DATRI’s Desk 1 V_2018.4 As we say goodbye to 2018 and welcome 2019, it reminds us of 2009 the year we started DATRI. It’s now 10 years since Dr. Soo Young Yang, myself and Mr. Raghu Rajagopal saw an unmet need in India for a large unrelated blood stem cell donor registry. Despite the discouragement we encountered from various sources, we knew if we persevered we would succeed. The start was not easy. A generous giſt from Histogenecs has allowed us to register 10,000 volunteer donors and have them HLA typed in high resoluon. We wanted to answer two quesons: 1) Could we recruit unrelated donors in India? 2) Could we facilitate an unrelated Blood Stem Cell Transplant from the 10,000 well HLA typed donor pool? The answer to both quesons was ‘Yes’. With the success of this proof of pilot project and with the financial support from Histogenecs for HLA typing costs, DATRI recruited donors from all over India. DATRI’s success can be aributed to teamwork on two levels. At the execuve level, Mr. Raghu Rajagopal, Dr. Soo Young Yang and myself were in constant communicaon on the issues and collaborated on soluons. In India, Mr Raghu Rajagopal played a crical role in recognizing the various regional and cultural factors in India that could interfere with decision making for potenal donors and in finding soluons for them. In 2014 Ms. Claudia Ru, the former CEO and co-founder of German donor center DKMS, started consulng for DATRI. Ms. Ru brought extensive experience in building a donor center and registry with the organizaonal structure required for DATRI. Ms. Ru was appointed to the role of Chief Financial Officer of DATRI as of December 14th, 2018. In this new posion, Ms. Ru will connue her contribuon to the growth of DATRI. Over the years we have built dedicated, knowledgeable, and hardworking teams in Chennai as well as throughout India. As of today, close to 400,000 blood stem cell volunteer donors have been registered in DATRI and have provided blood stem cells to 487 paents who needed transplants. We are entering our 10th anniversary year with the goal of reaching 1,000,000 registered donors in the near future. We hope that it will facilitate many more transplants for paents in need. I would like to express my special thanks to the transplant physicians and nurses who have made those life-saving transplants possible. DATRI is also well-supported by a team of dedicated volunteers, who are commied to the life-saving mission of DATRI. We are grateful for their relentless support. Finally, we applaud our brave donors who have saved the lives of paents and given them another chance in life. Happy New Year! Happy Life Saving! DATRI welcomes 2019 Dr. Nezih Cereb, Co-Founder & Chairperson As of today, close to 400,000 Blood Stem Cell volunteer donors have been registered in DATRI and have provided 487 Blood Stem Cells to paents who needed transplants.
Transcript
25-0
1-20
19
From DATRI’s Desk
1
V_20
18.4
As we say goodbye to 2018 and welcome 2019, it reminds us of 2009 the year we started DATRI. It’s now 10 years since Dr. Soo Young Yang, myself and Mr. Raghu Rajagopal saw an unmet need in India for a large unrelated blood stem cell donor registry. Despite the discouragement we encountered from various sources, we knew if we persevered we would succeed.
The start was not easy. A generous gift from Histogenetics has allowed us to register 10,000 volunteer donors and have them HLA typed in high resolution.
We wanted to answer two questions:
1) Could we recruit unrelated donors in India?
2) Could we facilitate an unrelated Blood Stem Cell Transplant from the 10,000 well HLA typed donor pool?
The answer to both questions was ‘Yes’.
With the success of this proof of pilot project and with the financial support from Histogenetics for HLA typing costs, DATRI recruited donors from all over India.
DATRI’s success can be attributed to teamwork on two levels. At the executive level, Mr. Raghu Rajagopal, Dr. Soo Young Yang and myself were in constant communication on the issues and collaborated on solutions. In India, Mr Raghu Rajagopal played a critical role in recognizing the various regional and cultural factors in India that could interfere with decision making for potential donors and in finding solutions for them.
In 2014 Ms. Claudia Rutt, the former CEO and co-founder of German donor center DKMS, started consulting for DATRI. Ms. Rutt brought extensive experience in building a donor center and registry with the organizational structure required for DATRI. Ms. Rutt was appointed to the role of Chief Financial Officer of DATRI as of December 14th, 2018. In this new position, Ms. Rutt will continue her contribution to the growth of DATRI.
Over the years we have built dedicated, knowledgeable, and hardworking teams in Chennai as well as throughout India.
As of today, close to 400,000 blood stem cell volunteer donors have been registered in DATRI and have provided blood stem cells to 487 patients who needed transplants. We are entering our 10th anniversary year with the goal of reaching 1,000,000 registered donors in the near future. We hope that it will facilitate many more transplants for patients in need. I would like to express my special thanks to the transplant physicians and nurses who have made those life-saving transplants possible. DATRI is also well-supported by a team of dedicated volunteers, who are committed to the life-saving mission of DATRI. We are grateful for their relentless support.
Finally, we applaud our brave donors who have saved the lives of patients and given them another chance in life. Happy New Year! Happy Life Saving!
DATRI welcomes 2019
Dr. Nezih Cereb,Co-Founder & Chairperson
As of today, close to 400,000 Blood Stem Cell volunteer donors have been registered in DATRI
and have provided 487 Blood Stem Cells to patients who needed transplants.
Once strangers, now bonded by blood
Recipients meet their Blood Stem Cell donors during PHOCON, a leading annual conference on Pediatric Hematology Oncology in the country.
DATRI’s Corner
2
‘In urgent need of a lifesaver’
Saana S Bhatnagar, 13-year-old,
Diagnosed with Thalassemia Major
#HelpSaana
Niya Fathima, 6 year old,
Diagnosed with Thalassemia
#SaveNiya
Navika Bansal, 2 year old,
Diagnosed with Thalassemia
#GiftALifeToNavika
Muhammed Asnan, 4 year old,
Diagnosed with Leukemia
#SaveAsnan
DATRI Blood Stem Cell Donors Registry organized a very special meet to celebrate the spirit of two young professionals Dr Shruti Kakkar and Mr. Prakash Kumar who saved the lives of 5 year old Vanshika Rohra, and 3 year old Disha KG by donating their Blood Stem Cells. The two were cured of Thalassemia and Hurler’s Syndrome respectively. The donors and recipients met for the first time during PHOCON 2018 - a leading annual Paediatric Haematology Oncology Conference held at Bangalore.
Father of 3 year old Disha KG, Mr.G.K. Gowri Sankar, said, “I strongly believe that while God cannot be around to directly help us, he sends messengers to do so. The donor and the DATRI family has been God sent.” The miracle did take place when Prakash Kumar, a 35 year old professional from Udupi, Karnataka working as Manager of Inter Company Process at Oracle India Pvt ltd in Bangalore was found to be a perfect match for 3 year old Disha.
Dr. Revathi Raj, Paediatric Hemato-Oncologist from Chennai and Disha’s transplant physician, said, “Relentless efforts of DATRI over the years have gifted lives to many of the patients. Nearly 81 of my patients have found their HLA matched donors through DATRI. However, there are still many who can be saved if more volunteer donors can come forward to become Blood Stem Cell donors.”
A very emotional Mr Neeraj Rohra, father of 5 year old Vanshika who was born with Thalassemia Major said, “It was very difficult for us to see Vanshika undergo painful blood transfusions every month. Today, my daughter is living a normal life. Simple thanks cannot express the deep gratitude we have for the selfless donor and DATRI for gifting a new life to my daughter. For the first time in India, a haematologist has donated Blood Stem Cells to an unknown recipient. Dr. Shruti Kakkar, a 37 year old doctor had registered with DATRI during a drive at Dayanand Medical College & Hospital in Ludhiana in May 2017 and donated Blood Stem cells to Vanshika.
Transplant physician of Ms. Vanshika, Dr Santanu Sen, Senior Hemeto-Oncologist Dr. Sunil Bhat and Raghu Rajagopal, Co-founder and CEO of DATRI Blood Stem Cell Donors Registry were present on the occasion.
#SaveVishwa
Vishwa Solanki, 13 year old,
Diagnosed with Thalassemia Major
DATRI in News
3
Divyabhaskar, Daman, 19th November 2018
Kaumudi, Thrissur, 14th November 2018
The Hindu, Bengaluru, 1st December 2018
Times of India, Bengaluru, 1st December 2018
Patrika News Network, Daman, 19th November 2018
Asli Azadi, Daman, 19th November 2018
Deshabhimani, Thrissur, 14th November 2018
Dainik Jagran, Ludhiana, 1st December 2018
Times of India, Nagpur, 15th December 2018
Times of India, Nagpur, 15th December 2018Tribune, Ludhiana, 7th December 2018 To read the complete media coverage
on DATRI’s interventions, kindly visit the ‘DATRI in News’ section at
datri.org/events-gallery/
DocTalk
4
Is it safe to donate Hematopoietic Stem Cells for someone who needs a transplant?
(A series of articles on Bone Marrow Transplant by Dr. Mammen Chandy, who is the pioneer in developing the field of hematology and bone marrow transplantation in India. Here is the part 1 of the series)
Let’s get to know further on the transplant procedure, conditioning, bone marrow harvest and transplant in the upcoming series.
Hematopoietic stem cell transplantation
- Worldwide and in India
Source: ISCTR Data
Worldwide – Annual Rate of HSC 40,000
In India in 2017 there were 76 centers and
2034 transplants
INDICATIONS FOR ALLOGENEIC TRANSPLANTATIONGenetic Disorders
Red cell disorders: Thalassaemia major,Sickle cell disease
Enzyme déficience disorders: Gauchers, Leucodystrophies, Lesch Nyhan etc.
Osteopetrosis.
Severe aplastic anemia
Damond Blackfan anemia (DBA)
Fanconi’s anemia
Myelodysplastic syndromes
Acute Myeloid Leukemia
Acute Lymphoblastic Leukemia
Chronic myeloid leukemia
Lymphomas
Bone marrow failure Malignant Diseases
GRAFT SOURCEBone marrow has traditionally been the graft source but increasing number of transplants are being done with mobilized Peripheral Blood Stem Cells [PBSC]. However because of the larger number of T-cells there is some increase in chronic graft versus host disease. The stem cells can be “pushed” into the peripheral blood using growth factors or a mobilizing agent called prelixafor and then collected using a Cell Separator. Alternatively cyclophosphamide is given and as the counts are rising there is an increase number of stem cells in the peripheral blood which can be harvested.
TYPES OF STEM CELL TRANSPLANTAllogeneic
Allogenic transplants are conducted, where the donor is a histocompatible sibling or family member (related) or from a donor registry (unrelated). Another source can be Umbilical cord blood, which is a rich source of Hematopoietic Stem Cells. The Bone Marrow and immune system of patient who has a HLA matched donor is destroyed (this is called conditioning) and the stem cells of the donor are harvested either from the Bone Marrow or the Peripheral Blood and transfused to reconstitute hematopoiesis.Syngeneic
Syngenic transplants are conducted, where the donor is an identical sibling. These transplants are easier to perform because engraftment is faster and GVHD is rare and if present mild. However relapse is much higher in syngeneic transplants for leukemia because there is no graft versus leukemia effect where the donors immune system recognizes differences in the recipient's cells and destroys residual leukemic cells.Autologous
Autologous transplants are conducted, where the patient acts as his own donor. Marrow must be free of tumors and the dose limiting toxicity of chemotherapy is marrow suppression. The patient's own Marrow or Peripheral Blood Stem Cells are harvested, cryopreserved and then returned back after ablative chemotherapy. In some situations, the stem cell product can be treated (purging) with either drugs or monoclonal antibodies to remove any minimal tumour in the harvest.
INTRODUCTION Hematopoietic Stem Cell Transplantation (HSCT) is widely used to treat various malignancies and a number of hematologic, immune and genetic diseases. Worldwide the annual rate of allogeneic HSC transplants now exceeds 40,000. HSCT is an effective treatment for Acute Leukemias and Bone Marrow failure syndromes such as aplastic anemia and myelodysplastic syndromes. In thalassemia major, HSCT now provides a cost effective alternative to transfusion/chelation therapy. Graft versus host disease, interstitial pneumonia, leukemic relapse and infection remain the major complications.
Dr Mammen Chandy MD, FRACP, FRCPA, FRCPDirector, Tata Medical Center, Kolkata.
It happened @ DATRI
5
Donor and Recipient Meet, Bangalore, 30th November 2018
Donor Recruitment Drive, Sri Narayana Guru College, Kozhikode, 2nd November 2018
Donor Recruitment Drive, Valsad, Gujarat, 7th October 2018
Donor Recruitment Drive at MHES College Kozhikode, 11th November 2018
Donor Recruitment Drive at a Marriage in Mumbai, 26th November 2018
Donor Recruitment Drive, Prakash Degree College (NSS Unit), Mumbai, 11th December 2018
Donor Recruitment Drive, Nagarjuna Institute of Management, Bengaluru, 11th October 2018
Registration Process
If an individual is found to be a match, there are two ways of donating blood stem cells i.e. Peripheral Blood Stem Cell (PBSC) donation and Bone Marrow Harvest. For a PBSC donation, once the donor completes the master health check-up, he/she will be given an injection called Granulocyte-Colony Stimulating Factor(GCSF) for 5 days to stimulate the blood stem cells production and bring them from the marrow to the blood stream. Blood Stem Cells will be collected in a 4-5 hours of out-patient procedure called Apheresis. For a Bone Marrow Harvest, the marrow will be collected from the hip bone of the donor under general Anesthesia. Here is a visual representation of the procedure.
The chances of getting a lifesaver for a patient suffering from fatal blood disorder is 1 in 10000 to 1 in over ten lakhs. Once found as an HLA matched donor, you could be the last chance of survival for the patient. Be a Blood Stem Cell Donor and give someone a second chance at life.
When an individual comes forward to register as a blood stem cell donor, he/she becomes a potential life-saver. Anyone between the age of 18-50 years can register as a blood stem cell donor. Register today and take the first step to save a life. The registration process is simple and it is represented below:
6
Donation Process
Attend an Awareness Session
Fill up an Application Form
Sign a Consent Form
Buccal SwabProcedure
HLA Typing Eligibility:18 to 50 years
Your Donation ofINR 1800 will help us to carry
out your HLA Typing
www.datri.org
www.datri.org
Peripheral Blood Stem Cell Donation
(Pbsc)
Bone MarrowDonation
(Or)
Transportation
4
3
Donation(Two Ways)
Master Health Check Up
2
Transplantation
5
Verification Of Match
1
Donors’ Testimonials
Dr. Shruti Kakkar Hematologist, Dayanand Medical College & Hospital Delhi
The purpose of life is not just to be happy for oneself. It is to be useful, to be honored, to be compassionate and to make some difference in others' lives. So you have the satisfaction that you just did not live, but lived well.
Eldho Varghese CEO, Rajasthan Marbles Ernakulam
Proud to be part of a noble drive and feeling delighted and blessed to be the tool of almighty to gift a life.
M. Chidhambara Singam Male Nurse and Drama Artist Ramanathapuram
“I was often unlucky in my life, but this time I was lucky enough to be a match for someone in need of a 'life'. I feel proud that I could gift a life, which is the
noblest act"
INDIA
Delhi
Gujarat
Maharashtra
Andhra Pradesh397
2017
229
203
29Telangana
214
475
90
DATRI Dashboard
7
(October - December 2018)
Statewise number of donors registered
Donations
October - 18 December - 16November - 12
JAN
- M
AR
APR - JUN JUL - SEP OCT NO
V DEC
0
35
,361
2
0,249 30,637 1,492 2,840 185
Life Savers Added & Lives Gifted
Goals 2019
423Tamil Nadu
Kerala
Karnataka
Andhra Pradesh
West Bengal
Maharashtra
Gujarat
Delhi TamilNadu
Kerala
Karnataka
WestBengal
Punjab 440
Rajasthan 155
This year DATRI intends to recruit 1,00,000 donors. The cost of HLA typing for all the donors will amount to INR 18 crores. Therefore, to continue its lifesaving mission DATRI is in need of monetary support from the socially responsible companies and sensitive individuals like you. Donate Now. Gift a Life!
Let’s make this possible! Register as Blood Stem Cell donors and donate money to support DATRI’s life saving mission.
www.datri.org
www.datri.org
Registrations
To Donate please visit: datri.org/donate-now/
This includes both Collection and Transplant Centers that DATRI has worked with until now.
Talk to us
Do get in touch with us with your comments, feedback and suggestions on this edition as well as on topics / information that you would like to read about in future editions. Write to us at [email protected]. We are looking forward to your inputs.
1207 -1208, 12th floor, Ticel Bio Park Phase 2, CSIR Road, Taramani, Chennai - 600113, India. Phone : +91 44 2254 1283, +91 44 4079 5300 Toll-Free Number: 1-800-300-32874
Donations to DATRI are exempt from taxunder section 80G of the Income Tax Act.
Account Name : DATRI Blood Stem Cell Donors RegistryAccount No : 000584000001189 Bank Name : Yes Bank LtdBranch Name : Uthamar Gandhi Salai, Nungambakkam, ChennaiIFSC Code : YESB0000005 Swift Code : YESBINBBXXX
It costs DATRI Rs. 1800/- to add a donor to the registry. DATRI is targeting to recruit 1,00,000 donors this year, to save more lives. We are in urgent need of funds and your monetary support will help our cause.
Scan to Donate Money
Paytm
Number+91 9042018667
Online payment
http://datri.org/donate-now/
Our Hospital Partners* AIMS, Kochi* Apollo Hospitals, Ahmedabad, Chennai, Delhi, Kolkata, Hyderabad * ACIBADEM University Hospital, Istanbul* ARTEMIS Hospital, Gurgaon* Adana Acibadem Hospital, Turkey* AOUI Verona, Italy* AMRI Hospital, KI* Ampang Hospital, Singapore* Asiri Central Hospital, Srilanka* Baylor University Medical Center, USA* Barnes Jewish Hospital* BGS Global, Bangalore* Birmingham Children's Hospital, Birmingham, UK* BL Kapoor Hospital, Delhi* CMC Vellore, Ludhiana* City of Hope, Los Angeles, USA* Cancer Institute, Adyar* Deenanath Mangeshkar Hospital, Pune* Dr.L.H Hiranandani Hospital, Mumbai* Direttore U.O.C. Onco-ematologia Pediatrica,Verona, Italy* Duke Medical Centre, NC, USA* Fortis Memorial Research Institute, Gurgaon* GCRI, Ahmedabad
* Hospital St Louis* Hammersmith Hospital, London* HCG, Bangalore* Hiranandani Hospital, Mumbai* Hematology Oncology & SCT and Research Center, Iran* Jaypee Hospital, Noida* Kings Hospital, London* Medanta-The Medicity, Gurgaon* Meenakshi Mission Hospital & Research Centre, Madurai* Manipal Hospital, Bangalore* Medical Park Bahcaelievler Hospital, Istanbul* M D Anderson Cancer Center, USA* MIOT Hospital, Chennai* Mayo Clinic Rochester, NY, USA* Medipol University, Turkey* Medical City Dallas Hospital, Dallas, USA* Narayana Health, Bangalore* Indo American, Hyderabad* KIMS Hospital, Hyderabad* Kovai medical Center and Hospital, Coimbatore* Nanavati Speciality Hospital, Mumbai* Kokilaben Dhirubhai Ambani Hospital & Medical Research Institute, Mumbai* Malabar Cancer Centre, Kerala
* Nawaloka Hospital, Srilanka* University Hospital of Cleveland, OHIO, USA* University College Hospital, London* Sir Ganga Ram Hospital, Delhi* Sisli Kolan International Hospital, Turkey* PD Hinduja Hospital, Mumbai* PGIMER, Chandigarh* Queen Elizabeth Hospital, Birmingham, UK* Rajiv Gandhi Cancer Institute, Delhi* Rosewell Park Cancer Institute, NY, USA* Royal Manchester Children’s Hospital, UK* Royal Melbourn Hospital, Australia* Royal Brisbane and Women’s Hospital, Australia* Sahyadri Superspeciality Hospital, Pune* Sterling Hospital, Ahmedabad* SRMC, Chennai* Southampton, Hampshire, UK* TMC Hospital, Kolkata* TMC Hospital, Mumbai* TCH The Children's Hospital, Boston, USA* UCSF, San Fransisco, USA* Vienna University Hospital, Austria* North Side Hospital, USA* Prince margaret Hospital, Canada* Raffles Hospital, Singapore* St. Vincent Hospital, Sydney* University Hospital of Wales, Cardiff, UK* Yashoda Hospital, Hyderabad
www.datri.org
www.datri.org
Jumbled Words
A. IonlbsimtoaiB. ElnatopitC. OnaitretsgraD. VmeofilnreaE. ErperlaphiF. Rybpolbiptiya
A - Mobilization, B - Potential, C - Registration, D - Femoral Vein,
E - Peripheral, F - Probability, G - Donors, H - Thalassemia, I - Leukemia
