About this questionnaire

This questionnaire aims to characterize and quantify the impact of COVID-19 on Rare Disease Patients in India. This is part of the ongoing efforts of GUaRDIAN initiative for Rare Disease Genomics at the CSIR Institute of Genomics and Integrative Biology(CSIR-IGIB). Patients/parents/care-givers can participate in the questionnaire.

All details provided would be kept confidential.

For more information, please contact

Dr Vinod Scaria vinods@igib.in

Please proceed further to participate in the questionnaire.

General Information

I am a *
Patient Sex *
Currently on Medication *

COVID-19 and Effect on management of patient health

Please provide your inputs on the effect of COVID-19 in the management of rare diseases and patient health

Timely Diagnosis, testing, and other lab services
Able to connect to Health care providers (Doctors, Nurses, Pharmacist)
Receiving prescribed drugs
Receiving healthcare service and equipment other than prescription drugs
Accessing other services (eg, rehabilitation or supportive care)

COVID19 Affect Quality of life of patient

Attending appointments because of fear of exposure to COVID-19
Anxiety, fear or stress (for self or those you support) because of COVID-19
Emotional issues as a result of COVID-19 with the society
Psychological distress due to COVID-19
Financial problems due to COVID-19
Do you have Medical problems due to finance?
Any community or government helping financially for rare disease patients
please name
Do you think persons with rare disease are more at risk for COVID-19 complications?
Ability to access information needed related to COVID-19
Ability of your rare disease healthcare team to provide appropriate care and treatment to you or the persons with rare disease
Ability of the healthcare system to provide appropriate care and treatment to Indian in general

COVID19 testing

Underwent COVID19 testing
Was the test positive ?
Does COVID19 positive status worsen your health condition?
Symptoms or clinical signs
Treatment or drugs prescribed
Ability of your healthcare team to provide appropriate care and treatment to you