Partnership Building visit to India!
Three representatives of the JWMDRC travelled to India to meet neuromuscular colleagues with an interest in the neuromuscular disorders from Bombay Hospital, AIIMS Delhi and NIMHANS Bangalore to discuss opportunities for collaboration focussed on the Limb Girdle Muscular Dystrophies (LGMD). This trip was funded by International Science Partnership Funds allocated to Newcastle University by UKRI. The visit coincided with a patient conference organised by the Jain Foundation and long-term collaborators Dr Pradnya Gaitonde and Dr Rashna Dastur from the Centre for Advanced Molecular Diagnostics in Neuromuscular Disorders (CAMDND) who also coordinate patient advocacy efforts for patients with LGMDR2 Dysferlinopathies in India.
Prof Volker Straub shared his experiences:
“The opportunity to meet patients, see their willingness to participate in research as well as discuss future ideas for collaborations with extremely experienced colleagues such as Prof Khadilkar and Dr Vishnu in the same trip was fantastic. India has a huge proportion of the global cohort for the LGMDs. In fact, Dr Khadilkar was clear LGMD represents his largest patient cohort in Mumbai, beyond Becker Muscular, which was surprising to me. I was impressed by initial conversations with the Neuroradiology colleagues and their interest in expanding current protocols to neuromuscular disease. There are so many opportunities to learn from each other for the benefit of LGMD patients globally!”
Lighting the lamp to open the event, and symbolically the collaboration, in the aptly named Jain Auditorium at Bombay Hospital
Sarah Emmons from the Jain Foundation was delighted by both the success of the meetings and the enthusiasm from all stakeholders:
“I was thrilled to see Volker and Meredith share learning from our funded studies and see the obvious enthusiasm the Indian colleagues and patients. I feel fully inspired to elevate our work in India in partnership!”
Dr Meredith James provided clinical outcome measure training in NSAD and PUL to 54 Physiotherapists and neurologists in both Mumbai and Delhi in order to permit the Indian colleagues to collect comparable data in their large cohorts and avoid fragmentation in the field. Meredith stressed:
“The enthusiasm, astute questions and skill level of the Indian neuro-physiotherapists in India is impressive, as were the number of PhD qualified physiotherapists in the centres represented. I hope we can build on this meeting to move the global LGMD community closer to trial readiness, exchanging expertise to improve physio led NMD care together. There is a lot that we can learn from the skilled Indian physiotherapists due to the differences in our health care systems.”
Heather Hilsden, project manager of the Jain Foundation funded International Clinical Outcome Study added:
“We hope that the enthusiasm from the expert centres, patient groups and the Jain Foundation will enable us to understand whether any differences in phenotype exist between the LGMDs in India and the cohorts represented in the International Clinical Outcome Study for Dysferlinopathy. We also identified shared research interests between our centres that go beyond Neuromuscular disease, learning that Prof Nalini’s group (NIMHANS Bangalore) has already published on gait in Neuromuscular disease. We hope to learn from their centre as we move our gait studies in Dysferlinopathy forward.”
There is a long-standing history of International exchange between Newcastle and Indian colleagues in Neurology. Volker Straub represented Newcastle University at the Centenary celebration for Prof Noshir Wadia, the founding father of Indian Neurology who started his neurology training at Newcastle University and shared many career milestones with Sir John Walton, after whom our own centre is named. Dr Vishnu Vy and Prof Nalini first collaborated with Volker through the LGMD cohorts in the MRC funded International Centre for Genomic Medicine in Neuromuscular Disease (ICGNMD), initiated in 2019.
Exchanging ideas in Dr Vishnu’s office
Dr Vishnu, current convenor of the Neuromuscular Chapter of Indian Academy of Neurology, thanked the Newcastle and Jain Foundation teams for their visit:
“I am really confident that it will result in a fruitful collaboration together, building on the work initiated through the ICGNMD. I look forward to working more closely with the teams in Bangalore and Mumbai”
Prof Volker Straub was able to dedicate time for this visit due the Newcastle NIHR BRC support for cohort and network development for rare diseases in the neuromuscular field.
Jain Foundation - Dysferlin Registry - LGMD2B/R2 - DYSFERLINOPATHY - MIYOSHI MYOPATHY 1
Best Neurologist in Mumbai | Bombay Hospital Neurology Centre
Author(s)
Heather Hilsden