• Objectives

1. Setting up of four long-term population-based cohorts of aging population to understand the process of Dementia in terms of its incidence and prevalence rate;
2. Setting up of four hospital based registry to catch the clinically defined Dementia population;
3. Setting up of a Bio-bank/Bio-repository at NBRC, Manesar. The collected samples such as blood, tissues, saliva and other samples will be temporarily stored at peripheral sites and transferred to NBRC for long-term storage. These samples can be used for biomarkers, genomics and proteomics-based studies;
4. To conduct basic biology research in order to identify early diagnostic markers including imaging markers

• Timeline

• Location

• Four Population based Cohorts-
• a) North (Rural- Palwal)
• b) North-East (Tribal- Shillong);
• c) East (Rural/Urban-Kolkata);
• d) South (Urban – Bangaluru);
• Four Hospital-based Registry- one each at:
• a) North (AIIMS, New Delhi)
• b) South (NIMHANS, Bangaluru)
• c) South (Sri Chitra Tirunal Institute of Medical Sciences, Kerala)
• d) East (Bangur Institute of Neuroscience, Kolkata)
• A bio-bank/biorepository at NBRC, Manesar

1. Basic Biology studies at three labs at the NBRC, Gurgaon and one lab at the SN Pradhan Centre for Neurosciences, Kolkata.
2. At a later stage other institutes/centers such as TIFR, Mumbai; IISc, Bangaluru; AIIMS, New Delhi; IISER Pune may join for basic research.

• Methods

The whole study is for 9 years with all 5 components starting in parallel. Under population-based component, there are:

Prevalence Phase – 2016-2019: Prevalence study at four sites: (Rural – North India; Urban – South India; Tribal –North-east India and Rural/Urban- East India)

Incidence Phase – Two cycles between 2020 and 2023: Incidence study at four sites (Rural – North India; Urban – South India; Tribal –North-east India and Rural/Urban- East India); 1^st Incidence Cycle assessment in the cohort assembled for prevalence study in 2020-2021 and 2^nd cycle of assessment in the same cohort in 2022-2023

The recruitment of the subjects will be based on:

Inclusion Criteria:

1.   60 yrs of age or more

2.   Only one subject from a household to be recruited

3.   Age proof (voter ID card or AADHAR card or school certificate) or as per the subject’s own assertion or the family’s information

4.   Consent to participate in both incidence and prevalence study

Exclusion Criteria:

1.   Any elderly who is bed ridden, hospitalized with terminal illness, family or care provider does not have details about his/her cognition function and cannot be assessed for the battery of NCD tests

2.   Family members not cooperative to assist in the NCD assessment

3.   Consent not available

The broad steps of diagnosis are-

1. Screening of the population above the age of 60 years using a culture and context specific validated screening tool in the community.
2. Administration of a battery of diagnostic tests (part of this may be administered in the field and partly at the referral institution): This step shall provide initial diagnosis and etiology of the NCD.

• Laboratory work-up: The subjects will be taken up for biochemical; genetic and neuro-imaging diagnostic workup as per the requirement. Broadly the laboratory work-up will have two components: essential i.e. all subjects shall undergo these tests and selective i.e. the physician-investigator shall decide about the specific/specialized tests in some either to confirm or to arrive at specific diagnosis.

• Expected Outcomes

1. Studying specific protective and risk factors unique to India will contribute to ongoing worldwide debates about risk factors for cognitive decline and dementia and strategies for delaying its onset thereby protecting cognitive health of the population
2. Partial genetic profile in dementia patients in Indian population.
3. Genetic test could be developed for mutations identified
4. Biomarker could be developed and tried for dementia diagnosis.
5. Genetic database describing nucleotide variants in different genes will be created.
6. Role of mutations in dementia pathogenesis will be evaluated.