IRA ANNOUNCEMENTS
PSORIATIC ARTHRITIS SPECIAL INTEREST GROUP INDIA
www.pasig.org.in
PSORIATIC ARTHRITIS SPECIAL INTEREST GROUP INDIA
Background and Vision
Founded in 2015, PASIG’s main objectives are education, research and charitable activities for the patients. It was formed with the intention of constituting a collaborative group of rheumatologists with a common vision of understanding the problems and finding ways to improve the treatment, outcomes and consequently quality of life of patients with psoriatic arthritis (PsA) in India.
Currently, the group has over 30 members from 18 states and union territories of India. The group has dermatology representation and endeavours to involve patient representatives.
Objectives
1. Create a common forum for collaboration between clinicians and researchers with an interest in PsA.
2. Create an India-wide PsA registry to collect data, identify hurdles to optimum management of the condition in India and propose solutions.
3. Validate the internationally accepted criteria, outcome measures and indices in Indian patients with PsA.
4. Develop India-specific guidelines and recommendations for PsA.
5. Work with the national and regional rheumatology societies to promote awareness and conduct research in the field of PsA.
6. Conduct physician awareness programmes and workshops for early and accurate diagnosis and evaluation of PsA.
7. Understand Indian PsA patients’ perspectives and problems through surveys and by bringing them on common platforms.
8. Conduct patient education and awareness programmes and involve volunteers for further propagation of awareness about PsA.
9. Conduct charitable screening and treatment camps for patients in deprived areas and facilitate access to medications.
Accomplishments and ongoing projects
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Research titled “Incidence and Prevalence of Psoriatic Arthritis in South East Asia” was presented at the EULAR annual congress 2016 and the abstract was published in the Annals of Rheumatic Diseases.
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Over 15 charitable camps have been conducted in the semi-urban/rural and deprived areas viz Mirzapur, Nandprayag, Badrinath, Joshimath, Masi, Bungidhar, Kanera, Fatehnagar, Kankroli, Sadri and Sheoganj with the provision of free medicines to the patients.
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Physician awareness programmes and CMEs have been conducted at Udaipur, Patna, Pune, Aligarh, Hapur, Ghaziabad, Azamgarh and Etawah since 2016.
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A dedicated web-based platform for data collection for the PASIG registry has been prepared and validated.
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Over 10 sites across India have obtained approval from the local ethics committees for the registry with another 10 in the process.
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A detailed survey of patients about their understanding of the disease, its management, drugs and the problems faced by them is nearing completion and the results would be out by the third quarter of this year.
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Conversations are ongoing with other international research groups for knowledge and research tools sharing for mutual benefit.
Chair: Dr PD Rath
Advisor: Dr Vinod Ravindran
Convenor: Dr Bimlesh Dhar Pandey
For more details and how you could help please contact:
Dr Bimlesh Dhar Pandey
Emails: pasigindia@gmail.com; bimlesh.pandey@yahoo.co.in
