Survey Posted September 1, 2011 Report Share Posted September 1, 2011 This post has been promoted to an article 19 Link to comment Share on other sites More sharing options...
Guest Posted September 2, 2011 Report Share Posted September 2, 2011 Where can I find the form? Link to comment Share on other sites More sharing options...
Survey Posted September 3, 2011 Author Report Share Posted September 3, 2011 Hi Hope1, You can take the survey by following this link: https://limesurvey.partners.org/limesurvey/index.php?sid=13667〈=en Thank you for your time! Link to comment Share on other sites More sharing options...
Survey Posted September 3, 2011 Author Report Share Posted September 3, 2011 Additionally, here is a link to the HPPD Foundation: http://hppdfoundation.com/ Link to comment Share on other sites More sharing options...
David S. Kozin Posted September 4, 2011 Report Share Posted September 4, 2011 I have pinned this topic to the top of the thread. You should read the link. http://hppdfoundation.com/what-is-hppd.html Link to comment Share on other sites More sharing options...
David S. Kozin Posted September 4, 2011 Report Share Posted September 4, 2011 I created a section for this information to organize thoughts and to increase visibility. Link to comment Share on other sites More sharing options...
Guest Posted September 10, 2011 Report Share Posted September 10, 2011 My only reservation is confidentiality. Is it safe to say that participation in research will never ever be publically shared? Link to comment Share on other sites More sharing options...
David S. Kozin Posted September 12, 2011 Report Share Posted September 12, 2011 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 Link to comment Share on other sites More sharing options...
Saber44 Posted September 13, 2011 Report Share Posted September 13, 2011 Took the survey a few days ago. Not like you have anything to lose in doing so. Link to comment Share on other sites More sharing options...
Guest Posted November 22, 2011 Report Share Posted November 22, 2011 http://grants.nih.gov/grants/guide/rfa-files/RFA-NS-12-002.html Link to comment Share on other sites More sharing options...
psilocybin420 Posted January 9, 2012 Report Share Posted January 9, 2012 I live near harvard how do i join? Link to comment Share on other sites More sharing options...
Ghormeh Sabzi Posted February 16, 2012 Report Share Posted February 16, 2012 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. Link to comment Share on other sites More sharing options...
Guest Posted March 12, 2012 Report Share Posted March 12, 2012 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... Link to comment Share on other sites More sharing options...
Sam Posted July 1, 2012 Report Share Posted July 1, 2012 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? Link to comment Share on other sites More sharing options...
mgrade Posted July 1, 2012 Report Share Posted July 1, 2012 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. Link to comment Share on other sites More sharing options...
Guest Posted July 4, 2012 Report Share Posted July 4, 2012 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. Link to comment Share on other sites More sharing options...
Guest Posted July 6, 2012 Report Share Posted July 6, 2012 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? Link to comment Share on other sites More sharing options...
Guest Posted July 6, 2012 Report Share Posted July 6, 2012 The email address to the HPPD foundation is not working. Link to comment Share on other sites More sharing options...
mgrade Posted July 6, 2012 Report Share Posted July 6, 2012 Hope, we should get this thing going 'cause we have a lot of debilitated, devoted people who could afford some valuable time and insight. Link to comment Share on other sites More sharing options...
myrslingerbult Posted October 25, 2012 Report Share Posted October 25, 2012 The foundation may want to change their copyright text from 2011 to 2012. Link to comment Share on other sites More sharing options...
David S. Kozin Posted October 25, 2012 Report Share Posted October 25, 2012 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!) Link to comment Share on other sites More sharing options...
myrslingerbult Posted October 25, 2012 Report Share Posted October 25, 2012 The HPPD Foundation gives me hope... 9 Link to comment Share on other sites More sharing options...
mgrade Posted November 20, 2012 Report Share Posted November 20, 2012 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/ Link to comment Share on other sites More sharing options...
myrslingerbult Posted November 21, 2012 Report Share Posted November 21, 2012 The http://hppdfoundation.com/ website may want to change their copyright text at the bottom of the page. Link to comment Share on other sites More sharing options...
Guest Posted December 23, 2012 Report Share Posted December 23, 2012 Think the HPPD foundation should be notified about this ? http://www.genengnews.com/gen-news-highlights/nida-refocuses-on-translational-genetic-medicine/81247734/ Link to comment Share on other sites More sharing options...
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