Birth Defect Registry

Written by 11 June, 2015 8:53 pm Category Archives Resources, FOGSI Registries.

narendraDr. Narendra Malhotra

Agra
Past President, FOGSI
E-mail : mailto:mnmhagra3@gmail.com

Birth Defect Registry

  1. When did it start , with basic information : Birth Defects Registry Of India is a part of Fetal Care Research Foundation which is a not for profit charity trust started in the year 1993 with the idea of providing Preventive Supportive and Curative care of birth defects for all strata of society in India. As part of our strategy we first wanted to establish baseline prevalence of birth defects hitherto not existent. The idea was mooted in 1995, and was formalized in the year 2001 under the name of Birth Defects Registry of India (BDRI).

    In the year 2008 the Federation of Obstetrics and Gynaecological Society of India ( FOGSI) decided to partner with BDRI and a FOGSIBDR was started to motivate members from all regions to participate. FOGSI has a membership of over 20000 obstetricians and we hope to collect a large data by motivating these members.

  2. Data collected so far : The registry we have started is a hospital based registry with passive reporting. We have about 450 hospitals participating from different parts of the country and we have analysed about 500,000+ deliveries so far. We have a systematic method of collecting data with an epidemiologist, statistician and dysmorpholgist devoted to this work. An annual report is published every year in the BDR News which is sent to all the members.
  3. Forms
    1. Enclosed.
      1. Rules & regulations
      2. Data furnishing
      3. Form A.
      4. Form B

Any other relevant information

We are happy to inform you that we have made reporting now online and we have encouraged several nodal centres to conduct meeting on birth defects.This is with a view to sensitise the Obstetricians and Paediatricians about the need for preventive supportive and curative care of birth defects.

We are happy to inform that we are successfully running a support group for MPS for over 130 families where supportive care is being given free of cost.. This support group has been able to significantly able to improve quality of life for these children. Dr Ashok Vellodi internationally renowned MPS Specialist of Great Ormond Childrens Hospital (United Kingdom) visits us every year and conducts a free clinic for these children.

To become a part of Fogsibdr all that has to be done is to log on to www.mediscansystems.org and click on Fogsibdr register.