Survey

HPPD GRANTS AVAILABLE

29 posts in this topic

My only reservation is confidentiality.

Is it safe to say that participation in research will never ever be publically shared?

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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

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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.

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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...

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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?

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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.

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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.

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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?

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

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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!)

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We should sign up for this. I'm just very tired. If received such money, main objective would be the correct appropriation of the funds.

[Last thing we need is someone to get it and blow it on coke and strippers in Vegas].

http://www.samhsa.gov/grants/

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