To understand the current country specific scenario in terms of the strengths, needs and management gaps, specifically in regions underserved by movement disorder specialists.
National Parkinson Network
Parkinson's disease is the second most common neurodegenerative disorder in adults over the age of 60 years, with rapidly increasing prevalence in India. India is home to nearly one- tenths of the worldwide PD population. Although there is no cure currently, what makes PD unique among neurodegenerative disorders is the availability of effective treatments to control the symptoms. These include medications, surgical therapies such as Deep Brain Stimulation and infusion therapies. In addition, allied healthcare interventions such as physical therapy, speech and swallowing therapy are integral to improve the quality of life of persons living with PD. With currently available treatments, most persons living with PD are able to lead productive lives and contribute effectively to society. However, there is a lack of resources on multiple fronts to support people living with PD- including lack of awareness about the disease and treatment options, limited access to specialist treatment, financial barriers and poor social support.
The National Parkinson Network is a subgroup of the Movement Disorder Society of India focusing specifically on Parkinson's disease. The NPN envisages to systematically identify the gaps and challenges related to living with PD in India and suggest solutions appropriate to the Indian healthcare context.
Goals and Mandate
-
-
To formulate country specific management guidelines and algorithms for PD
-
To generate data and strategies that can guide healthcare policy making and to pursue opportunities for involvement in the same
-
To create and offer resources for professional education targeted at non movement disorder specialists- including general neurologists, physicians, allied healthcare professionals, patients and caregivers
-
To provide a professional networking mechanism for collaborative research
Chair: Prof. Pramod Pal, NIMHANS, Bengaluru
Co-Chairs: Dr. Hrishikesh Kumar, Institute of Neurosciences, Kolkata | Dr. Roopa Rajan, AIIMS, New Delhi
Members:
| Dr. Soaham Desai | Dr. Divyani Garg | Dr. Nitish Kamble | Dr. Somdatta Ray |
| Dr. Achal Srivastava | Dr. Heli Shah | Dr. Pramod Pal | Dr. Sreenivas UMS |
| Prof. Asha Kishore | Dr. Hrishikesh Kumar | Dr. Ravi Yadav | Dr. Sumit Singh |
| Dr. Dhruv Batra | Dr. Jacky Gangluy | Dr. Roopa Rajan | Dr. Suvorit Bhowmick |
| Dr. Dinkar Kulshrestha | Dr. Jasloveleen Kaur | Dr. Sanjay Pandey | Dr. Syam Krishnan |
| Dr. Divya MR | Dr. Lulup Kumar Sahoo | Dr. Shreyashi Jha | Dr. U. Meenakshisundaram |
Inaugural meeting of NPN
AIIMS, New Delhi hosts the first National Parkinson Network Chintan Shivir
The inaugural meeting of the NPN was held on 13 December 2024 at the Dr. Ramalingaswami Boardroom, AIIMS New Delhi. This first of its kind initiative brought together a core group of movement disorder experts and other key stakeholders, including patient representatives, policy makers and funders to identify the gaps and felt needs and support country specific solutions to improve the care provided to persons living with PD in India. The meeting was inaugurated by Prof. M. Shrinivas, Director, AIIMS New Delhi in a function that saw the presence of Prof. Shailesh Gaikwad, Chief, Neurosciences Centre, Prof. Manjari Tripathi, Head, Department of Neurology, Prof. Asha Kishore, President MDSI and Prof. Pramod Pal, President Elect, MDSI. Movement disorder specialists Prof. Achal Srivastava, Dr. Soaham Desai, Dr. Ravi Yadav, Dr. Roopa Rajan and Dr. Hrishikesh Kumar spoke on several aspects of PD that need urgent attention in the country. Prof. R K Dhamija, Chair of the National Brain Health Task Force, and Dr. Anamika Gambhir, Dr. Neha Bansal from the Department of Biotechnology attended. Thirteen education leaflets with authentic information on topics related to PD were released during the function. The deliberations explored the need for large scale PD epidemiology studies in India and strategies to address modifiable risk factors such as diabetes and low physical activity levels. The health economics of PD care in India was highlighted in the discussions- significant number of patients pay out of pocket and need for broader insurance coverage, and inclusion of advanced therapies such as deep brain stimulation in government schemes were put forward. Need for gathering further patient-centric information from persons living with PD and caregivers and strategies to enhance access and awareness were debated. Initial steps towards developing India specific guidelines for diagnosis and treatment of PD were taken in the meeting. Strategies to encourage and foster PD patient support groups were also discussed. The NPN along with the key stakeholders- patients, care partners and support groups, plans to work towards these goals in the subsequent years in tandem with the healthcare ecosystem and policymakers.
Patient Education Leaflets on Parkinson's Disease:
Authentic and concise information, curated by movement disorder experts.