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Telemedicine and Helpline


The interest in telemedicine and telehealth has increased recently due to technological advancement. This technology was first used by NASA to transmit physiological parameters from both spacecraft and spacesuit.


  1. With telemedicine it is easy to reach wider population with use of technology. For example, people from remote areas can get specialist help through video call. They can share their data electronically and also can get prescription online.
  2. The local health worker such as general physician or nurse can work as intermediate and help in getting vital information to get definitediagnosis. This will enables faster medical advice for needy patients which will avoid critical delay in required treatment.
  3. This is more than useful in country like India where specialist service is not available widely. In situation of rare diseases for instance spinal muscular atrophy, patients can reach out to a Pediatric neurologist with help of local paediatrician as their local support. This will increase the outreached of specialist to every corner of vast country like India and also enables timely action whenever it is needed. COVID-19 pandemic has hampered treatment for various other health condition as most of the focus is to stop this pandemic.
  4. All the health sources and infrastructure being used for this pandemic.
  5. Care of SMA patients is also getting compromised as there is a risk of catching infection while accessing health care by visiting clinicals or hospital. Routine visits to physiotherapist, neurologist and pulmonologists are getting delayed. Also, SMA patients can get serious COVID-19 infection if there is already a respiratory compromised. 6

Setting up Telemedicine and Helpline numbers

The first priority would be to give organise structure to the telemedicine module. This will require a framework within which telehealth can be delivered without difficulties. The helpline numbers can be useful as first point of contact for every patient of Spinal muscular atrophy.
This can be handled by person with basic knowledge of SMA. As many queries need not required medical attention and can be solved by the assistants like nurses or social workers. This will work as triage and then patients who needs medical attention can be forwarded to the tele OPD. For country like India there should be a zonal system where patient can be referred to respective zones, so that in near future when parents want to see specialist face to face they can travel easily in their zone. Initially we can set up five major zones namely North, South, East, West and Central. Each Zone can have subzone at state level or city level. This will be helpful to maintain a patient flow accordingly. Each Zonal or Sub-zonal OPD can be run by volunteer doctors on specific date and time. This will ensure uniformity across the nation and also helps organisation to deliver specific care to the remote patients.

Delivering a telehealth

To delivering a telehealth each patient need to get registered and enrol into the telehealth system. Inform and signed consent for the telehealth is a must. Also we encourage patient and their relatives to see physician whenever its possible. Tele health is not a substitute for a traditional patient care. In fact it is just add on to our usual patient health care. We can utilise the freely available health portals for video consultation by taking into consideration of privacy and data safety. Electronic notes can be maintained for future reference as per the guideline of Government of India.  (7)  Patient can access prescriptions by online mode either by e-mail or by messaging system.


This COVID-19 pandemic situation has put great challenges in front of health system. As focus remains to tackle pandemic
as effectively and as early as possible, but care of other health conditions should continue as usual. SMA patients are already in critical health and they need every attention for their fight against it. Use of telehealth can be a gamechanger for these
patients and will enable care, safety and timely treatment for them.

As of now, helpline numbers cited in the “CureSMA India ” website can be used to get connected to various doctors and telemedicine facilities.


  1. Dasgupta A, Deb S. Telemedicine: A New Horizon in Public Health in India. Indian J Community Med Off Publ Indian AssocPrevSoc Med. 2008 Jan;33(1):3–8.
  2. Zhang X-Y, Zhang P. Telemedicine in clinical setting. ExpTher Med. 2016 Oct;12(4):2405–7.
  3. Kruse CS, Krowski N, Rodriguez B, Tran L, Vela J, Brooks M. Telehealth and patient satisfaction: a systematic review and narrative analysis. BMJ Open. 2017 Aug;7(8):e016242.
  4. Palacios Cruz M, Santos E, Velázquez Cervantes MA, León Juárez M. COVID-19, a worldwide public health emergency. Rev ClinEsp [Internet]. 2020 Apr 21 [cited 2020 Jul 24];Available from:
  5. COVID-19 significantly impacts health services for noncommunicable diseases [Internet].[cited 2020 Jul 24]. Available from: .
  6. Veerapandiyan A, Connolly AM, Finkel RS, Arya K, Mathews KD, Smith EC, et al.Spinal muscular atrophy care in the COVID‐19 pandemic era. Muscle Nerve [Internet]. 2020 May 3 [cited 2020 Jul 24];
    Available from:
  7. Government of India: Telemedicine Practice Guidelines-Enabling Registered Medical Practitioners to Provide Healthcare Using Telemedicine. Dated 25/03/2020