Perception Foundation

Hallucinogen Persisting Perception Disorder (HPPD) Macquarie University (MQ) - ICAN Protocol Hallucinogen persisting perception disorder (HPPD) refers to the condition in which an individual, after the consumption of hallucinogens, experiences recurring sensory disturbances years afterwards that are reminiscent of those experienced during the intoxication of the hallucinogen. It is particularly associated with the consumption of lysergic acid diethylamide (LSD) ecstasy (MDMA) and other recreational and prescription medications. This project is a collaboration of Macquarie University and ICAN, and is carried out by our highly specialised team of clinical researchers, Ophthalmologists and Psychiatrists who have been studying HPPD and its relevant visual symptoms for many years. The team is based in Australia with Dr Wei He (MQ/ICAN), Associate Professor Paul Sowman (MQ), Professor Harry McConnell (ICAN), Associate Professor Clare Fraser (MQ), Ms Anneliese McConnell (MQ/ICAN). We are also collaborating with Dr Steven Locke from Harvard and Dr Natalie Gukasyan from Johns Hopkins for the questionnaire part of this study. Phase 1: The LimeSurvey Questionnaire The questionnaire examines the nature of HPPD, the effect of hallucinogens on the condition and the changes in the brain processing of vision that may occur in patients with HPPD. The study involves an online survey to obtain information across basic demographics, drug use, HPPD symptoms and medical comorbidities. We are looking at the nature of symptoms, their medications and other conditions people may have. Everyone is invited to participate in the questionnaire study. The questionnaire takes about 15 minutes - we will send you a link when you email us at hppd@mq.edu.au **Please check your Spam or Junk mail box for the link once you have email us but not got the link.** Phase 2: Neuroimaging Protocol (only for those who completed the questionnaire) Patients in Australia who have completed the questionaries will also have the opportunity to participate in our functional Magnetic Resonance Imaging (fMRI) and Magnetoencephalography (MEG) studies to precisely measure the spatial and temporal activities of the visual pathways, which will be used to compare with control participants who are free from visual hallucinations. If you are in Australia and are interested in participating the neuroimaging protocol once completed the questionnaire study, please fill in this Microsoft Form and we will contact you for more information. We hope to be able to offer the neuroimaging protocol more widely, i.e., to non-Australian participants who completed the questionnaire study, in the future. Note: This study was made possible through the generous support of several foundations, one of which is the Perception Restoration Foundation (PRF). If you'd like to find out more about the PRF you can do so here:

Hi All, It’s with great enthusiasm that we announce the launch of the Perception Restoration Foundation (PRF), a non-profit committed to organize, support, and fund scientific research into HPPD and work towards a cure. The HPPD community has shown tremendous resilience over the past few decades. In online communities and patient-founded nonprofits, we’ve helped each other navigate the difficulties of living with these symptoms. And at the PRF, it’s our ambition to act as a representative, engaged and self-reflective voice for the HPPD community, which has been undercovered and marginalised in most discussions around psychedelics and other triggering drugs. We’ve put together an amazing team of researchers, clinicians, investors, and corporations who have a genuine interest in increasing the awareness of HPPD, and researching how we could one day cure the condition. We have three projects that we’re ready to announce, and several others that will be announced at a later time. To make sure you don’t miss any updates -- sign up for our mailing list: Macquarie University in Australia: This will be the deepest neuroimaging to date on HPPD patients’ brains, using EEG, MEG and fMRI scans. It’s hoped that the scans will surface a mechanism at the neurophysiological level which may pave the way for new and more effective treatments. Due to COVID restrictions, only Australian residents are eligible to be scanned, but there is an online survey into HPPD that everyone is encouraged to fill out. In the future, we may open participation in other locations so be sure to fill out the survey even if you’re not in Australia. See this post for more information on the study and instructions for participating: The University of Melbourne: Researchers are developing a psychophysics tool - a way of representing visual experience on screens - that will test if subjects may have HPPD or be at risk for developing it. Early evidence suggests that developing HPPD-style changes may be more likely if people have past experience of visual disturbances, so the tool may also help prevent people at risk for developing HPPD from dosing. A documentary: The PRF is helping to put together a documentary to raise awareness and attention for the disorder. We’ve spoken to more than 100 HPPD sufferers from around the world as part of this project. You can see the trailer here. This will be matched by awareness-raising activity across the board. One of our team is the journalist and writer, Ed Prideaux, who’s invested in the psychedelic community while having lived with HPPD-style perceptual changes since he was a teenager. Ed appeared on the Adventures Through The Mind podcast hosted by James W Jesso - an influential psychedelic media personality - and will appear on a number of other channels in the next month, including Third Wave, Psychedelics Today and Psychedelic Spotlight. Thanks all. Please contact us to say hello, ask any questions, share concerns, and, if applicable, to apply for participation in the Macquarie study.(As above, it’d really help us if you signed up to our email newsletter, too!) Thanks - The PRF team