National Ataxia Network  

Vision

    National Ataxia Network (NAN) has been developed with a vision to enhance the understanding and treatment of ataxic disorders. Under the MDSI platform, NAN will be a collaborative network, uniting clinicians, basic scientists, geneticists, allied health professionals, and patients.

Mandate

  1. The NAN's primary goals are to raise awareness of ataxic disorders, understand the disease burden, foster a holistic approach to diagnosis and management, enhance genetic counselling and develop treatment guidelines.
  2. Other essential priorities under the NAN include achieving consensus on preventive strategies, developing educational materials for patients and clinicians, establishing rehabilitation protocols, creating physician-friendly scales for assessing ataxia and facilitating disability certification

Goals

Immediate goals

  • Literature review on the current landscape of hereditary ataxias in India
  • Development of informational videos and leaflets on ataxia geared towards patients and caregivers
  • Development of physician and patient surveys on ataxia to identify diagnostic and treatment gaps, and felt needs

Short-term goals

  • Development of a website for NAN, where information resources and other relevant materials can be accessed
  • Development of an ataxia severity scale, particularly applicable in India, reflective of actual disability and inclusive of patient-reported outcomes
  • Development of a video collection of different ataxias seen in India
  • Development of a textbook on ataxias seen in the Asia-Oceania region in collaboration with other AOS countries
  • Literature review on ataxias in the AOS region, in collaboration with other AOS countries

Long-term goals

  • Establishment of a national ataxia registry which will enrol patients on a rolling basis
  • Establishment of liaison networks with genetic counsellors to provide detailed genetic counselling to persons with ataxia and their families
  • Establishment of liaison networks with rehabilitation specialists to enable access to rehabilitation services
  • Prevention of autosomal recessive ataxias by increasing awareness at the national level regarding consanguinity and endogamous practices in India

Members:

Prof. Pramod Pal Dr. Divya Radhakrishnan Dr. Roopa Rajan Dr. Jacky Ganguly
Prof. Achal K Srivastava Dr. U Meenakshisundaram Dr. Mohammed Faruq Dr. Annu Agarwal
Prof. Ravi Yadav Dr. Hrishikesh Kumar Dr. Nitish Kamble Dr. Divyani Garg
Dr. Prashanth LK Dr. Vikram V Holla Dr. Pankaj Agarwal