Groundbreaking study happening now! Please participate

[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: 

 

Edited November 11, 2021 by Perception Foundation

[Hall89]

This sure is good news, thank you so much for starting this! I hope that everyone here that reads this is taking 10-15 minutes to do that questionnaire!

Edited November 13, 2021 by Hall89

[NRFAdmin]

…

Edited December 2, 2021 by NRFAdmin

[Honeycat]

Hi, I got HPPD twice from mescaline and then psilocybin. Both lots of HPPD involved symptoms not listed in your "common symptoms" and I believe my psilocybin case of HPPD may be one of the worst cases of HPPD you will have heard of. I got mescaline-induced HPPD mid September 2020 and wasn't fully better, but was a lot better when I got psilocybin-induced HPPD in February. It was absolutely horrific and I had to be put on 4mg of clonazepam which helped quite a lot for 3 months until my psychiatrist decided to start ripping me off them too fast. My HPPD came hard and fast and when I was put back on 4mg it no longer worked and I was thrown into living Hell. There was a time where I truly believed there was only one way for my story to end. Psychedelics and benzos combined have ruined my life for now.

It wasn't from MDMA or LSD, but if I'm still of help I would like to take part in your study. 

[Hall89]

On 11/16/2021 at 3:08 PM, NRFAdmin said:

PRF which basically is a carbon copy of the NRF. Amazing how one individual, a patient no less infiltrated our organization, refused to sign an NDA, stole contacts, materials that took over a decade to create. That’s the PRF.

This is how that announcement should read…

https://www.neurogroup.org/2017/01/25/peter-goadsby-needs-our-help/

I have a hard time believing this since it was the Visual snow initiative that told me about the PRF when i asked them if there was any research going on about HPPD 6-7 months ago. Then they told me about the PRF and that they were working hard to get on their fett and do what they do and that their site would go live in the end of the year.

[NRFAdmin]

It doesn’t matter what you believe.

The fact of the matter is that the NRF is directly responsible for recruiting the researcher and acquiring the initial funding from the individual associated with the HPPD Foundation that gave life to this project.

The PRF had NOTHING to do with it and while I welcome collaboration I have a problem with anyone taking credit for work that doesn’t belong to them. If they want to whitewash the thousands of hours the NRF put into this project, I’m afraid that’s not going to happen. We were the forerunners on this research protocol having invested many years in making it happen. 
 

Anything the PRF manages to accomplish is a credit to them, just not the MacQuarie Protocol.

[Sabathil]

Hi, is this study still active?

I’ve filled the LimeSurvey last week but haven’t heard back

 

thanks