Progressive Supranuclear Palsy patient’s wish inspires move to set up brain bank

If all goes as planned Mumbai could soon welcome its first brain donation and research facility the first in Maharashtra as well mdash a groundbreaking step that could transform the cityrsquos and statersquos neurological research landscapeWhat makes this initiative truly remarkable is that it didnrsquot begin in policy circles or institutions but with the quiet courage of the Shah family from Santacruz Anjana Shah 65 currently battling Progressive Supranuclear Palsy PSP has expressed her deeply selfless wish to donate her brain to medical research after her deathHowever in the absence of a clear local system for brain donation covering retrieval storage and documentation the family found themselves lost in a maze of procedures after pledging Anjanarsquos brain to NIMHANS Indiarsquos premier neuroscience institute and oldest brain bank in the countryBYL Nair Hospital PicFilemidday highlighted Anjanarsquos story in its July 22 article She Speaks in Silence which detailed her powerful act of generosity and her familyrsquos appeal for a streamlined donation processA followup piece Mind Over Matter dated July 23 featured Dr Anita Mahadevan Coordinator of the Human Brain Bank at NIMHANS National Institute of Mental Health and Neuro Sciences who emphasised that brain donation could be key to unlocking cures for rare disorders if only more families knew how to contributeConfirming the development Dr Mahadevan said ldquoWersquove initiated discussions with Topiwala National Medical College and BYL Nair Hospital Mumbai Central and while talks are still in early stages subject to sanction of funding from ICMR and also the BMC authorities Topiwala Medical College will become the first operational brain bank centre in Maharashtra Given Mumbairsquos high volume of both medicolegal and clinical autopsies the highest in the country establishing a brain bank here represents a major advancement It will enable families who wish to donate their loved onesrsquo brains for research to do so locally contributing to crucial scientific progressrdquoDr Shailesh MohiteICMR has funded two other brain banks at AIIMS Bhubaneswar and PGIMER Chandigarh as satellite banks with NIMHANS as the nodal centre to form the first network of brain banks in India she addedldquoA single donated brain can support multiple research studies and significantly deepen our understanding of brain disorders Historically brain donation has seen cultural and institutional barriers unlike eye or skin donation NIMHANS is committed to changing that by simplifying protocols raising awareness and encouraging brain donation as a vital step toward future medical breakthroughsrdquo said Dr MahadevanDr Shailesh Mohite Dean of Topiwala National Medical College said ldquoAbout a month ago the family approached me expressing their wish to donate the brain of a terminally ill patient to NIMHANS However they were unsure how to proceed mdash whether the patient should die at home or in the hospital and how to handle the brain removal and transportation logisticsAnjana with her daughter Asmi and husband Vijay PicAtul KambleldquoI explained that much like donation of organs such as eyes skin etc under the Human Organ Transplant Act HOTA brain donation should not be a problem The main concerns were about who would remove the brain where it would be removed and how to transport it if the patient died at homerdquoHe added that in typical organ donations the hospital where the organ is retrieved maintains custody and then the organ is officially transferred ldquoBut in this case since the brain is for research and not for transplant there was uncertaintyrdquo he saidOften people pledge to donate their organs or even their entire body However in this case the pledge to donate brain for science and research was made to NIMHANS Bengaluru while the family resided in Mumbai The main challenge was determining who would retrieve the brain and where the retrieval could take place in the event of death at homeThe human brain bank at NIMHANS in Bengaluru Pic CourtesyDr Anita MahadevanDr Mohite said ldquoSince the brain had already been pledged to NIMHANS and it was not feasible to identify a local centre for brain retrieval within the jurisdiction of the donorrsquos residence we are of the view that Mumbai should have designated brain retrieval centres We have expressed our willingness to assist in making this possible at Topiwala National Medical College and BYL Nair hospitalrdquoIn such cases no autopsy is performed and the relativersquos consent is sufficient There are two kinds of autopsies medicolegal MLC and clinical For brain donation under nonMLC circumstances no police NOC is required mdash only family consent is necessary he addedThe donation process can be simplified with a living will or an advance directive Dr Mohite explainedldquoWhen a person is conscious and of sound mind they can declare that in the case of a terminal illness or vegetative state they do not wish to undergo resuscitation or invasive treatment Such directives should be notarised and a copy submitted to the local police stationrdquoDr Sweety Shinde Associate Professor of Pathology at Topiwala National Medical College and BYL Nair Hospital expressed her support for the initiative ldquoWe are definitely interested in the proposal to establish a brain bank or brain donation centre at our institution subject to receiving all requisite consents and approvalsrdquoDr Shinde has completed a monthlong observership under Dr Mahadevan at NIMHANS where she gained valuable insights into the functioning of Indiarsquos first brain bank This exposure has provided her with a clear understanding of the facilityrsquos structure protocols and significanceWhen asked whether she or her team is currently engaged in research involving human organs Dr Shinde explained ldquoAt present our work is limited to studying biopsies for inhouse patients for diagnostic purposes along with histopathological examinations in clinical and medicolegal autopsy casesrdquoShe emphasised that a brain donation centre at Nair Hospital would address a crucial gap in neuroresearch infrastructure and would also be highly beneficial for families in and around Mumbai who are willing to donate their loved onesrsquo organs for research purposesldquoOnce all legal formalities documentation and institutional approvals are in place with a dedicated and trained team such a centre could be made operational and would evolve into a vital and impactful unit for the study of the human brain to uncover answers to unresolved questions particularly in cases of neurodegenerative diseases and their underlying causesrdquo said Dr ShindeNIMHANS Brain BankEstablished in 1995 the NIMHANS Brain Bank has been a cornerstone of neurological and psychiatric research in India providing ethically sourced highquality human brain tissues It supports studies on conditions like Alzheimerrsquos Parkinsonrsquos schizophrenia dementia epilepsy infections and stroke many of which are rising with Indiarsquos ageing populationDespite advances in diagnostics postmortem brain analysis remains crucial for confirming neurodegenerative diseases Each donated brain aids in identifying biomarkers improving diagnosis and developing treatmentsBeyond research the Brain Bank fosters public awareness promoting brain donation as an altruistic contribution to science A single brain can fuel many studies driving breakthroughs in understanding brain disordersTraditionally pledging organs for research has faced cultural and institutional resistance Unlike eye or skin donation systems brain donation for research remains underdeveloped NIMHANS is working to change this by simplifying the process and encouraging broader support for organ donation Donations made voluntarily by individuals or families are handled with dignity and preserved under strict protocolsBrain Bank Network InitiativeLaunched in October 2021 the ICMRfunded ldquoBrain Bank Network India Initiativerdquo aims to establish satellite brain banks at AIIMS Bhubaneswar and PGIMER Chandigarh linked to NIMHANS Brain Bank as the nodal centreBiobanks are vital for advancing neuroscience research India despite its vast population and diversity had only one brain bank at NIMHANS limiting access to brain tissue for research In contrast the US and Europe operate dozens of such facilities through established networksLimited autopsy rates and geographical constraints on NIMHANS further emphasise the need for satellite centres AIIMS Bhubaneswar and PGIMER Chandigarh with strong autopsy and neuropathology infrastructure were chosen for their ability to collect store and share highquality brain tissueMilestones 2021ndash2024 Satellite brain banks established at AIIMS and PGIMER Harmonised protocols a national sample database and tissuesharing guidelines developed Annual autopsy and biobanking workshops held manuals and training videos created NIMHANS Brain Museum expanded its outreach mounting technology and workshops shared with new centres Brain museums initiated and school outreach started at AIIMS Bhubaneswar