Does Anyone Know How Much Money Is Spent on the Research of Hunter Syndrome? Im Doing a Project and Need Help?
Question by Jadey-kins: does anyone know how much money is spent on the research of hunter syndrome? im doing a project and need help?
Also how much is needed to possibly find a cure? Im working to do research for my college class and cannot seem to find it anywhere.
Best answer:
Answer by Mags
There may be organizations which can provide some of this information for you to compile but I have serious doubts that there is a clearing house for this type of information.
Here are a few links to get you going on your research. In the first you will see that the annual cost for dosing Elaprase for Hunter syndrome or Hunter disease, an orphan condition, is going to be $ 300,000 per year. If it is that expensive part of the reason is low demand but the other part is the cost of the research.
http://www.boston.com/business/healthcare/articles/2006/07/25/shire_drug_gets_fda_approval/
There is never an estimate on what it will cost to find a cure because it is difficult to determine what the track is now and what other overlapping discovery will be made, etc
The next link is to clinical trials for Hunter syndrome. There are contact party email addresses at each study site. You can always write to them to find out the grant allocation totals for the particular study.
http://clinicaltrials.gov/ct2/results?cond=%22Hunter+Syndrome%22
You may be able to get some really good information through NORD, the National Organization for Rare Diseases. It may cost you a few dollars for a report or two but they might have some reports that can be of use.
http://www.rarediseases.org/search/rdbdetail_abstract.html?disname=Hunter%20Syndrome
You have to realize that research may have been going on for decades for related areas which also affect Hunter Syndrome and that cost might need to be included as well.
Another place to contact: the pharmaceutical companies which produce the treatments – you’ll have to look that up but here is an article which might give you some ideas on where else to look:
http://www.redorbit.com/news/health/797088/elapraser_for_the_treatment_of_hunter_syndrome_approved_by_the/index.html
This is a project which will involve some serious research. Please be careful to define your terms carefully when you write for information. for example, do you mean ALL the monies that have ever been spent on research? The monies allotted within the last year? Be sure the parameters are realistically defines.
This is a much larger project than you might realize – start you email requests for information now because it may take a few weeks for responses. good luck.
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