Hi Gus. I emailed PD on this exact issue a few weeks back. I have a friend who has a 5 year old nephew with similar health problems. I intentionally did not post the email chain here, despite it being of interest as it was quite personal however I think more good can come from repeating it here to give hope to others.
Read from the bottom up. ------------ Date: Wednesday, 8 May 2019 at 3:01 pm Hello YYYYY, Thanks for the message and ongoing support. Thank you also for sharing XXXXs story which is very sad and clearly a difficulty situation. It is our goal to broaden clinical indications for multiple groups with disabilities so we can address children with these types of conditions. But this is a long term project that has not started today. We are just about to start the children’s app clinical trial for infants aged 0-1 years. This will be followed by the 1-3 years of age version and then the 5 years+. So we do not have access to a clinically valid (and regulatory cleared) version as yet to try in this situation. The adult App would not be suitable for children of this age category as it is developed for adult faces – mostly elderly. I am sure XXXXXs health care professionals are providing his family with the best support that is currently available. I am sorry we cannot help at this stage, but I have passed your email to our clinical team to keep them abreast of XXXXXs situation and to reach out to you when we have a PainChek version that could be used to help. Kind regards, Philip
Date: Tuesday, 7 May 2019 at 4:55 pm To: Philip Daffas Subject: Application and further development of PainChek
Hi Philip, Congratulations on your big win with the government $5m grant. As a shareholder personally and with my SMSF I clearly have a vested interest, but in so far as helping non-verbal dementia sufferers, nurses and caring staff its a huge gift. While PainChek is designed for adults, and with the 'baby app' undergoing clinical trials currently I am wondering about the present or future use of PainChek in a situation a dear friend finds herself in. She has a nephew who is 5 years old with a genetic condition known as 1p36 deletion syndrome. In his version of the condition he has epilepsy, cerebral palsy, autism and heart conditions. He is largely non-verbal though can communicate a few key words. He (and his family) are currently learning Auslan and also uses a PODD to communicate. Without perhaps being specific to this boys case, would PainCheck assist in helping the parents determine pain? As I understand it the home carer version is being released this quarter, is this news something I could pass along to the family for them to look out for. Or is waiting the outcome and release of the 'baby app' going to be a likely scenario? If this is an area that has not been explored or trialled I am sure the family would love to assist.The mother also asked me to ask you if there is research or any possibility in to the future of developments that can detect the onset of seizures. She feels that XXXXX is 'a little off' before the seizures take hold but he is unable to tell her. She wonders if there is any detectable pain or if there could be related facial micro features that can warn of an approaching seizure? A quick Wikipedia search reveals that there are 400,000 dementia sufferers in Australia and 250,000 epilepsy sufferers so there is a potential market, if you find you're not busy enough expanding in to NZ, Singapore, the UK, Europe and possibly the USA. Kind regards, YYYYY
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