Jump to content
Hallucinogen Persisting Perception Disorder (HPPD) Support Forum
Survey

HPPD GRANTS AVAILABLE

Recommended Posts

I have expressed my concern to the appropriate Institution (ethics board) regarding the following problem I have with the survey which is the following:

Prior to the user receiving an informed consent, which details the protections you receive, you are mandated to provide first and last name along with e-mail adress.

This is a simple solution and simple fix. I know the Lead Programmer of the survey software they implemented for this research.

I will write the IRB a letter expressing my concern that HPPD database is being collected, which is a risk because no database is perfect, and the user is not informed of these risks prior to giving sensitive information.

I expect this to be fixed shortly. You have rights as a participant, and I will stand up for rights of all participants in all projects.

Yes, this project was developed in the old Lab I provided assistance and consultation to during my position at the Research Institution. I was invited to consult with the Institution on the implementation of this software for research. I will review the research and send a written request regarding my concerns to the appropriate group and expect these to be dealt with. However, because I needed to return to school and the project did not yet receive IRB approval until a few months after I left the Institution, I am unaware of the changes and without full knowledge of the updates to the study.... I am happy to have contributed and take part in research affiliated with McLean HOspital.

Sincerely,

David S. Kozin

Share this post


Link to post
Share on other sites

Tried to answer the survey but kept getting told I had not answered mandatory information ... even though I had. I was therefore unable to compelte.

Sent HPPD Foundation a question I had - emailed bounced.

Share this post


Link to post
Share on other sites

This concerns me as I've sent many emails along with the link to the foundation to the most prestigious institutions that specialize in neuroscience hoping they'd take an interest in HPPD and the grant monies...

  • Upvote 1

Share this post


Link to post
Share on other sites

How did they get the money? It doesn't seem like HPPD affects more than a few thousand people. Is there a fundraisers or something going on?

Share this post


Link to post
Share on other sites

I would love to be involved with HPPD research. Though, I don't have a PhD or MD. ..... but I wonder if the few who are interested, like on this thread, could coordinate something.

Share this post


Link to post
Share on other sites

The very best we can do right now is donate money to David while he's in Iceland attempting to recruit the help of the best neuroscientists and perform a research study. If he's forced to come back his work may be set back for at least a year or abandoned alltogether.

Share this post


Link to post
Share on other sites

I visited the Bill & Melinda Gates foundation which gives grants to neglected diseases. Money is given to non profits like the HPPD Foundation. Couldn't the fiundation secure more funding from this source?

Share this post


Link to post
Share on other sites

Hope, we should get this thing going 'cause we have a lot of debilitated, devoted people who could afford some valuable time and insight.

Share this post


Link to post
Share on other sites

I will be sending out a mass e-mail, but wanted to advise the foundation has paid for multiple years of web hosting and service for HPPDonline.com (so no more downtime for years!)

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.


×
×
  • Create New...

Important Information

By using this site, you agree to our Terms of Use.