‘The Donar Sub : Willing Letter to accept donation We understand from reliable source that you are giving donation for research and development project approved under section 35 (i) & (ii) of income tax Act Subject to certain terms and conditions. We are pleased to inform you that our institution/ organization enjoys that said approval and is actually engaged in various research project apart from 35 (i) & (i) approval Our This Donation is being processed through our nominated person whose detail is given below. We have the following Documents: 1. _N.G.O. Registration Certificates : E0427 RAJKOT (09-11-2012) 2. 12 AA Registration No. +: DIT/E/GUI/12A/B942/AAMIS63S 3. 80G Exemption No. = CITR TEA/S05/5/GUI/2012/2013 4. 35Gi) & (ii) approval No CBDT/203/116/2015.16/03, 5. Gazette of India under sec (i) &(ii) _ : $0415 (H)9209/09/2015 (RTI Issued) 6. SIRO certificate H-12019101/2005 ADMN/21228/06/2013 7. Project Name CANCER HOSPITAL PROJECT AND TEMPLE PROJECT 8, CBDT CANCER HOSPITAL : 28,000 CRORES ( F.N.CBDT/1201/1085/2018-19 ) 9. CBDT TEMPLE PROJECT + 10,000 CRORES ( F.N.CBDT/1201/1086/2018-19 ) 10. NITI Aayog Reg. No. GJ/2017/0161812 (SHREE SANATAN TRUST UPLETA) We hereby agree to accept the donation as per the Personal meeting and agreement will be signed for thesame. ‘Thanking You fc SANATAN TRUST For SHRE ( petites Managing Titsice - TrusteeTRUST REG. NO. (£/9427 RAJKOT) (09-11-2012) (&) SHREE SAMATAN TRUST WEBSITE : WWW.SHREESANATANTRUSTUPLETA.WEBS.COM UPLETA - 360490 Ref. No. 3s) /or Date:- 16/1 /aoty RESOLUTION ADDED IN DEED AS PER DEED RULE NUMBER 14 ‘The Governing body meeting held at SHREE SANATAN TRUST office UPLETA on 14.11.2014, the governing body has passed the following resolutions. Due to the demand by too many Cancer patients regarding the need of CANCER HOSPITAL for oor patients in SAURASHTRA (GUJRAT) In this particular Space there is no CANCER HOSPITAL functioning in such a big area, so we hereby propose a CANCER HOSPITAL PROJECT to the RBI Ahmadabad for giving Donor TAX Exemptions under 35 (|) & (I!) from CBDT o0f Government of India undér (T ACT 1961 for Act 2009. In accordance with the recognition of need of CANCER HOSPITAL we are passing the following resolution to SPECIAL PROJECT of CANCER HOSPITAL in SAURASHTRA (Gujarat) ‘And we authorize SHREE SANATAN TRUST to open New Bank Accounts in Suitable Banks to facilitate the Donors in india and Abroad the above mentioned purpose of Creating CANCER HOSPITAL and bearing all the Cost regarding the same. ‘This above resolution is passed by all the Trustees without any objection. Ul 9 atlas . er CR 1 9 3. eT oa ea a) Senne a esa 9 4 Fanaa, S. \ \ 7 Pimah ir Copy o: 1. Asstt. Charity Commissioner Rajkot + 2 RBIAhmedabad si of For SHREE SANATAN TRUST prboy? Managing Trusize - Trus'ee) —— ae ho INDEX ‘SrNo Subject Table of content | Introduction 1 Thalassemia Molecular basis Thalassemia classification {2 Project outline Project Goal | z Project Area Results Details of ‘Ongoing Project Carrier Screening Family Centered Approach Population Screening hen Antenatal Screening Flow Chart for the Project 3 Details of ongoing Facilities at out Laboratory Performance programs 4 Genetic Counseling | Ongoing projects,Summary of counseling work : from 1993 to 31/3/1999 counseling Break-up 5 | Educational component | Awareness, Affected Group, Medical Professional Community worker, General public 6 | Treatment of Thalassemia | Treatment of Thalassemia major patients Blood major patients Transfusion Therapy i Future plan 8 _| List of staff member 9 Scientific Advisory committee 10 Ethical committes 114 Annexure | 12 Annexure Il 18 Annexure Ill 14 Annexure IV 15 Annexure V 16 ‘Annexure VI 47 Annexure VIL fs fre EM cot eee)18 ‘Annexure Vill 19 Annexure IX 20 Annexure X 24 Annexure XI 22 Annexure XilINTRODUCTION The term Thalassemia is derived from Greek word ‘Thalassa’ meaning the “The sea as patients of Thalassemia were initially identified in the area around the Mediterranean sea. For the same reason the disease was also called ‘Mediterranean Anemia’. Thalassemia is an inherited blood disorder in which the body is unable to make adequate hemoglobin. Hemoglobin is present in the Red Blood Cells. Normally Red Blood cells survive for 120 days but in Thalassemia Red Blood Cell. Survival is reduced. Hemoglobin takes oxygen from lungs. Carries it to the tissues and transports carbon dioxide to the lung. Hemoglobin is made from proteins. These proteins consist of a & B chains (adult hemoglobin ca & B2). Normally 2a & 28 chains are essential to from hemoglobin. It is important that these 2 types of chains should be present in equal amount for the survival of Red Cells. Any Imbalance in these chains results in reduced Red Cell survival...n foetal life. 2a chains form hemoglobin. 2. gamma chains and this hemoglobin is called fetal hemogiobin(azy.). At birth foetal hemoglobin accounts for 80% of hemoglobin. After birth the foetal hemoglobin level starts falling while the level of adult hemoglobin (a2 & Ba) increases. By one year of age adult hemoglobin accounts for 98% of hemoglobin while the remaining 2% is foetal hemoglobin, which contains 2a & 25(as%:). Molecular_basis of Thalassemia In Thalassemia the synthesis of either a chains or 8 and manifestations are due to excessive a chains. In a Thalassemia a chains are reduced and the excess of LIS y, wv GE® : EyBchains causes reduced survival. in india B Thalassemia is very common and the term Thalassemia is almost synonymous with 8 Thalassemia Based upon the clinical presentation B Thalassemia can be classified in to 4. Thalassemia ima : This term has been used to describe the ‘silent carrier’, a state of heterozygous f Thalassemia that can not be detected by symptoms or simple blood test. 2, Thalassemia minor : This condition is also known as the B Thalassemia trait or carrier state. The affected persons have one normal & one Thalassemia 8 glob in gene. They are essentially healthy individuals with mid or minimal anaemia. 3. Thalassemia major : Children with Thalassemia major carry two Thalassaemic genes. They present with moderate to severe pallor during infancy or early childhood and require blood to sustain life. 4. Thalassemia Inter media: This term has been applied to a clinical condition of intermediate severity between minor and major. The affected children are anacmic but during infection or stress, the anemia becomes severe and may Fequire blood transfusion.Hereditary persistence of foetal hemoglobin(HPFH): HPFH describes a heterogeneous group of inherited disorder characterized by increased level of foetal hemoglobin (Hemoglobin F) in an adults. There are no major clinical or hematological findings.| | | | | | Project outdineProject Outline Project Goal f ei 3. 4, 5. Eradication of Thalassemia by detection of carrier & Prevention of birth of Thalassemia major child. Availability of adequate & safe blood. . Availability of obstetric & laboratory facilities for prenatal diagnosis Genetic Counseling . Education & awareness for Thalassemia. Project Area Project will cover the region of Saurashra-kutch to begin with However, progressively the project opened for rest of Gujrat and ultimately we intend for nationwide activity. Cities .districts & village covered: Rajkot, Jamnagar, surendranagar, Junagadh, porbandar, Bhavnagar, Bhuj and Gandhidham . Total population directly benefiting by project. + * * * + Around 12 million comprising adults and children of Saurashtra-kutch region . Target Group A child whose both parents suffer from Thalassemia minor inherits Thalassemia major. The only way to treat is by prevention of disease- prevention is possible by detection of carriers, conscious matrimonial planning, advice motivation. Education. Creating awareness & counseling. The project work is progress-This centre for Thalassemia prevention &control is in action sincs 1993, ‘Screening of adults for Thalassemia-Chromatography on various machiné- 5.182 tests.done so far. {E®> NESTROFT test for primary screening-56,457 people tested so far. ey shat | ae OBIE <* Counseling Session - 2.960. ‘* Prenatal test done in collaboration with B J wadia hospital Mumbai-298 test done. Results Details of ongoing project Carrier Sereening We aim to detect the disorder before conception & try to identify carrier couple and inform them of their-risk and option to avoid it the approaches we have taken. > Family Centered Approach Once a carrier is identified follow up of other family members is done. Once identified we inform the carrier that siblings have a one in two risk and cousins @ one in eight risk of being carrier and we try to motivate all of them for testing, v Population Screening Itis done at various levels. In high schools. in colleges. Premarital. Family doctor's clinics, Family planning clinics in far of villages > Antenatal Screening 1. Every pregnant mother during the first antenatal visit. Her blood examination will be carried out for cartier state of Thalassemia 2. If mother is carrier then husband's blood will be examined. 3. If both parents are positive for Thalassemia carrier state. Prenatal diagnosis will be offered. 4. If already there is a family history of a child bom with Thalassemia disease, then prenatal diagnosis will be given for the next pregnancy, not only to the families of saurashira & kutch but from anywhere in the country. Facilities of Laboratory at our centre ‘We have in our lab> Facility for NESTROFT test > Cell Counter > HPLC machine-variant from Bio-Rad Performance ‘Thalassemia control & prevention program me has several components. The crucial component is mass counseling by organizing camps. Next component is tests for screening to identify carriers or traits. NESTROFT test was administered for 55.414 adults. This works out as 770 persons were subjected to this test every month on an average during 93-94 to 98-99. In words everyday 25 persons on an average have gone this test in this test in this centere. The outcome of test is as under: (Cut of 55.44 persons tested on the period of six years 6,44 have been identified as. Positive in this group of persons tested at least 11% respondents are found to be positive. Similarly the centre had organized variant test for 8892 persons during 93-94 to 98- 98 This works out as 123 persons were administered this test every month on an average. The outcome is as under:positive cases is about 705% 686 persons out of this group have been identified as positive. The percentage of the Details of the relevant statistics & charts are available in Annexure | to Xil. |- Flow Chart for the project Blood Collected of antenatal case sent to MSR for testing If confirmed husband's biood Not suspected also examined for cartier state ‘Negative Rcrve No further studies for Thalassemia No action {abnormal haemoglobins can be looked for) Prenatal Diagnosis At Wadia Centre Prenatal Diagnosis was carried out from foetal blood sample (18 to 20 weeks) of Ptrgnancy. This is being done at present at the specially set up centre at the Research Department of Bai jerbai wadia Hospital for children Chorionic Villi sample (CVS ) at 8 to 12 weeks of pregnancy was also collected and processed at abovementioned centre. ‘The Research Centre of B J Wadia Hospital for children is well equipped and well started & they have taken note of our association with them.We organize camps for awareness at above-mentioned places followed by NESTROFT camp. Those who are positive for NESTROFT are than subject to variant test. However unfortunately all do not turn up for further testing.Siete Guna |Educational Component Awareness Education and sensitization of population is a pre requisite for successful prevention Program Awareness is created at various levels by organizing lectures. Seminars exhibitions and distribution of books. The various levels at such awareness is creaied at which such awareness is created aro following. 1. Affected Group Thalassemia Families : Parents of Thalassaemic patients are the primary source of creating awareness in their families & the community. There near relatives are among highest group. We motivate relatives of such affected families to come forward for testing. 2. Medical Prufessionals Obstetric ins :Lectures & seminars are organized to encourage the obstetrician for Prenatal screening of mother- if any mother is carrier her husband is investigate for’ thalassaemic carrier status on priority base. Pediatricians : pediatricians of local areas are updated to provide best management care to Thalassaemic by seminar and lecturer. General Physicians: General Physicians can play an important role in diagnosing ‘Thalassaemia traits.in routine check ups at schools. Colleges at premarital and pre conception stage — So we motivare general physicians for same. Pathological Laboratories: Pathological Laboratories can advice hemoglobin analysis to an individual whose RBC indices are suggestive B Thalassaemia trait. 3. Community Workers Primary Health Workers: we motivate public health care workers to spread information at grass root level.Social workers: Social workers and activist of social organization are educated and courage to hold small group meeting in the area of their operation. The students of university for degree of social worker are given lecture about ‘Thalassaemia test as well, Community Leader: community leader of various community are persuaded and lectures are taken about Thalassaemia during their congregregation. 4. General Public Teaching Institutions: Lectures are organized at schools, colleges & exhibition are arranged at site to explain Thalassaemia. Public places: We display posters at all marriage bureaus . clinics. Market laces. Fairs. Hospitals and all other public places with this slogan: ‘First ‘Thalassaemia test and then Engagement’ Media: electronic & print media can play important role in sensitising the community. Therefore we give for statistical detail see the Annexure Xil attached here with.ikea PaFuture Plan Any amounis of efforts for eradication of Thalassaemia from Indian soil is worth implenching. MSR. strongly believes that emphasis has to be on prevention and control of this. Dreaded disease. active methods and treatment of Thalassaemia major are very expensive and beyond the reach of economically under-private god and weaker section of the society. Thus. IMSRF will strengthen and enlarge its present activities in future, which are as follows © To enlist support and help to set up more Thalassaemia prevention &control Program me. : © To enlist support for starting a prenatal diagnostic centers at iocal level. * To call for the support to legislate the making of Thalassaemia test mandatory before marriage. ® Making counseling mandatory for the prospective parents. © Counseling to prospective couples before marriage, for undertaking Thalassaemia trait screening test. * Counseling for undertaking prenatal diagnosis for pregnant women to avoid the birth of a Thalassaemia child. © Identifying-and undertaking mass screening in the risk communities like ‘Sindhis,Punjabis,Lohanas,Bhanushalis, Kutchis, Bengalis, Musiims,Jains,Brah mins, Wankars,Patels and others in rural and Urban areas particularly for underprivileged non-literate and weaker section of the society