Publications on Usher Syndrome and Deafblindness

This page contains a list of research papers, news articles and other publications related to Usher syndrome and deafblindness, especially those published or focused on India. One purpose for compiling this list is to record what has been done in India for welfare of the deafblind community. 

For more global research news about Usher syndrome, you can also refer to the following websites:


INDEX:

  • Research Papers
  • News Articles
  • Educating Children with Deafblindness
  • Other Publications


RESEARCH PAPERS


Evaluation of sleep quality and fatigue in patients with Usher syndrome type 2a. 2023 May 4. Jessie Hendricks, et al. Ophthalmology Science. [Gist: USH2a patients had significantly worst "sleep quality, sleep disorders, fatigue, and daytime sleepiness. Sleep disorder was not correlated with level of visual impairment"]


Retinitis pigmentosa in Usher syndrome in India: Electronic medical records driven big data analytics: Report III. 2022. Indian J Ophthalmol 2022;70:2540-5. [Gist: 401 / 2,541,810 = 0.02% or 2/10,000 hospital-based prevalence of USH in India. Out of 10,000 ophthalmology patients, approximately 2 have Usher]


Using Optogenetics to Restore Vision. 2022 August. The Eye And Eye Foundation of Pittsburgh. [Gist: PIONEER early stage human clinical trial is ongoing.  Uses Optogenetics retina gene therapy. Optogenetics creates artificial photoreceptors out of the remaining cells in the retina. Stimulation in end-stage RP may hold promise for partial vision restoration (artificial type of vision).  Early results: well tolerated in all 9 treated patients to date]


A rare case of type 3 usher syndrome with bilateral cystoid macular edema treated with topical dorzolamide. 2021. Athul Puthalath, et al. Department of Ophthalmology, All India Institute of Medical Sciences (AIIMS), Rishikesh, Uttarakhand, India.


Virtual Indian Sign Language Interpreter. 2020. Krishna, S., Jindal, A. R., & Jayagopi, D. 2020 4th International Conference on Vision, Image and Signal Processing (pp. 1-5). [Converts spoken English to ISL via a virtual interpreter. A demo is given] 


Implementation and evaluation of a rural community-based pediatric hearing screening program integrating in-person and tele-diagnostic auditory brainstem response (ABR). 2019. Vidya Ramkumar, et al. Department of Speech, Language and Hearing Sciences, Sri Ramachandra Institute of Higher Education and Research, Porur, Chennai, Tamil Nadu.  [Gist: Village health workers (VHWs) underwent training on conducting Distortion Product Oto Acoustic Emissions (DPOAE) screening and assisting in tele-ABR in South India]


Real-time Indian Sign Language Recognition. 2018. Kartik Shenoy, et al. [Gist: software system that recognized ISL alphabet and gestures, using smartphone camera]


Follow-up in newborn hearing screening - A systematic review. 2016 November.  Rohit Ravi et al. International Journal of Pediatric Otorhinolaryngology, Volume 90, November 2016, Pages 29-36. 


Infant Hearing Screening in India: Current Status and Way Forward. 2015. Suneela Garg, et al. International Journal of Preventive Medicine. 2015; 6: 113. [Gist: advocates for newborn hearing screening. Cites the Indian government program National Program for the Prevention and Control of Deafness (NPPCD). Recommends screening techniques applicable for infants]


Psychosis, Mood and Behavioral Disorders in Usher Syndrome: Review of the Literature. 2015.


Neonatal hearing screening - the Indian experience. 2013 December. Neelam Vaid, et al. [Gist: A neonatal hearing screening programme has been established in Pune, India. A total of 2621 babies were screened from August 2005 to August 2007 using otoacoustic emissions (OAE) followed by brainstem evoked response audiometry (BERA) for those who referred on the second OAE testing. Fifteen of these 52 babies were found to have a significant hearing loss.] 


Children with Usher syndrome: mental and behavioral disorders. 2012 March 27. Jesper Dammeyer. Behavioral and Brain Functions. [Gist: "Monitoring the child's social, cognitive and communicative development is important for reducing the risk of developing mental and behavioral disorders." ]


NEWS ARTICLES



Demand to have sign language curriculum after class 12 raised on World Sign Language Day.  2022 September. Pune News.  [Gist: Deaf activists in Pune demand that more colleges teach courses in sign language. In spite of many laws that have provisions for it, implementation is lagging]

Talk Show with Dr Khadijat ‘Kubby’ Rashid, Dean, Gallaudet University (Parts 1 and 2). 2022 July. ISH News.  [Gist: Gallaudet University in the USA is a premier bilingual university for the deaf and hard of hearing, teaching in ASL and English. In the distant future, Gallaudet University wants to set up a school in India. Need to collaborate with the Indian govt for that. Recommends that cochlear implant users learn sign language early. Stresses the importance of deaf schools in India to teach using both a spoken language AND sign language.]

 
Hearing screening for newborns should be made compulsory in India. 2021 March. Longjam Dineshwori. [Gist: newborn hearing screening is not in the list of mandatory health screening procedures for newborns, except in Kerala. In India, over 27,000 children are born deaf every year.]



Influencer for disabled held from boarding flight over impairment. Sept 2019. Pune Times Mirror. [Gist: The story of how Zamir Dhale was stalled from boarding his AirAsia flight, and the subsequent actions of the AirAsia staff.]


Benefits of Govt Schemes Yet to Reach Those Hit by Deafblindness. 2018 March. [Gist: government need to frame rules for the new Rights of Persons with Disability Act]

R. Kumar and M. Kameswaran. ENT and Audiology News. [Gist: 200+ cochlear implant centers  established across India. Many government schemes were used to provide free implants to children aged below 6 years, withe the goal of early intervention. This article focused on the initiative done in Tamil Nadu (considered the "deafness state of India"), the strategies used to increase its effectiveness, and its outcome.]

New Interventions for the Deafblind. 2010 July. Freny Manecksha. indiatogether.org.


EDUCATING CHILDREN WITH DEAFBLINDNESS


Tactile Learning Strategies. National Center on Deafblindness. [webpage with links to various tactile strategies such as Tactile Modeling, Mutual Tactile Attention, Hand-under-hand Interactions, etc. Useful for teachers and parents of deafblind children.]

OTHER PUBLICATIONS



Annual Report of the Department of Empowerment of Persons with Disabilities for the year 2022-23. 2023. Department of Empowerment of Persons with Disabilities (Divyangjan). [Gist: An important document that provides a summary of all government institutions, schemes and programs aimed at helping PwDs in India. As this report has been produced every year since 2017, we can determine which programs are new for that year. Download older reports from here]  

Book on Deafblindness. 2020. National Institute for Empowerment of Persons with Multiple Disabilities.

Deafblindness in Children: Time to Act in India. 2019. Anuradha Shetye. Indian Pediatrics 2019, 56: 1003-1006.


WFDB Global Report 2018: At risk of exclusion from CRPD and SDGS implementation: Inequality and persons with deafblindness. Sept 2018. World Federation of the Deafblind.

 

Looking beyond cataracts: Meeting visual needs of children with additional disabilities. 2008. Namita Jacob, et al. 9th International Conference on Low Vision.

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