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Below are comments from our users:
This article was very interesting and I hope there will be more like it. What a wonderful idea to produce a web page like this and share the information for the general public AND IN LAYMAN TERMS!!
Very effective use of electronic technology to assist the inquisitive lay person seeking to understand Gaucher Disease. Dr. Harden is to be congratulated!
Outstanding exhibit - I hope we will see more like it - information technology is changing and it would be good for the NIH to have more web exhibits like this. There are many scientists at NIH who have done seminal work. Well thought out exhibits like this serve a useful role in scientific education for the layperson but in addition allow current NIH staff to learn about the rich intellectual history of the campus.
I really appreciate this approach, what a wonderful way to keep us "NIHer's" aware of all the wonderful scientific work that goes on here at this great institution. I have always believed in and am proud of the NIH and what it means to the U.S. and the world.
I would like to suggest two improvements to your otherwise excellent article on Gaucher Disease. Both refer to the material on page 4. First, you do not make clear how the normal enzymen in vivo functions with the longer carbohydrate covering up the mannose residues. Second, the chart on the response of hemoglobin to enzyme therapy is not clear because the symbols in the figure are not defined. I hope these points can be clarified so that the piece might be completely understood by a layman/student.
An outstanding report which illustrates the unusual persistance of Dr. Brady's research career.
Excellent teaching tool. Good example of the effectiveness of electronic dissemination of information. Hope to see more.
The pop up definitions are very helpful. Find out more and Glossary make it a rich site. And feedback is easy too. Thank you
As a lay person with an administrative background, I found this presentation very interesting. It was informative without being overwhelming. It found out many facts about a disease of which I was completely uninformed. It is wonderful to see the history, development, and current direction we are taking with our research. New treatments offer hope to an otherwise grim diagnosis. Thank you for making this fascinating presentation available on the web. I chanced upon it and had not intended to read the whole thing. But as I read, I became more and more interested. I particularly liked the blue highlights that permitted me to read the definitions of terms as I went along. It's a very creative way to enhance learning! Thank you again.
I enjoyed reading and learning from this informative presentation. It helped to have the "blue" words with the definitions. I will introduce my son to this article because it is "reader friendly" and can be comprehended by the lay person. It would be interesting to have a link to how genetic research is done, i.e. the technique.
Vicky--I will make this one of my cool web sites on the next DDIR's Web Bd. Nice work! I sent a couple typos I caught via the feedback page. Those are obviously not intended for publication... just as a way to check your feedback page... chrs, celia
I very much enjoyed your website describing several decades of research into Gaucher disease and applaud your efforts. I believe that this type of public education is important. It allows public insight into medical research and hopefully dispels misperception and misaprehensions. I hope this will become a continuing series, and that more extensive stories, highlighting the contributions of multiple research teams, will be next.
I enjoyed visiting your website entitled "Roscoe Brady and Gaucher disease". Great job!
I enjoyed your smoothly functioning web-exhibit.
Good presentation! Just the right length and level of detail. Enjoyed it!
Usually, when scientific information such as this come across the email, as a lay person, I usually delete it. But this time I was curious to know what Gaucher's disease is. I'm glad I took time to read some of the site information. Some of the symptoms are my own problems, especially the digestion, bone pain and anemia aspects. I have been diagnosed with a blood problem and anemia. What I'm interested in is testing. May I have it done here at NIH or shall I consult my personal physician? Please inform.
Nice way to see the exhibit when you can't get to NIH.
Very nicely explained.
Nice layout and description of the disease.
Great web site! Informative, easy to read, & not intimating to the non-scientist. Vicky: your site is a great example of the best use of the medium. It's clear, easy to access, and is aesthetically pleasing. Bravo
Before reading this article I was not familar with Gaucher Disease. The article provided an excellent explanation of what the disease is and how it effects all of us. After seeing the diagram that demonstrated how the gene can be spread through heredity, I wanted to go get tested. The results yeilded a lot of carriers as well as individuals who actually have the disease. After the negative facts, the article went on to give an excellent example of how there is hope for curing those who have Gaucher Disease. This was an interesting article and thank you for making it available.
I particularly appreciate being able to access the "exhibit" by e-mail. thank you. I enjoyed reading about gouchers disease, and specially liked the pop up definitions that were incorporated in the text.
Nice exhibit. Thanks.
Excellent! Great for undergraduates, medical students, and the public. Congratulations. Do more in this format.
I find it interesting that you do not reference OTA-BP-H-104 (Oct.1992) Federal and Private Roles in the Development and Provision of Alglucerase Therapy for Gaucher Disease. While the Brady/Gaucher story is told well, we are only seeing part of the story. This drug, and its later development by industy makes a wonderful case history and raises many ethical questions.
I thought this was very well done. Easy to read and kept my interest. I especially like the terms in blue that are a mini glossary. Sometimes you need to know in easy terms what a term means and how it fits with the context of the text you are reading. I think a disease and researcher should be profiled monthly on the NIH web page. I think scientist, lay people, kids, school, teacher would love it. The part about heredity was easy and well done. People need to understand how these traits get passed from parent to child etc. I loved it. Do more. Very informative and nicely explained. Congratulations!
This presentation is outstanding. Please keep me on your email list! I especially liked the glossary linkages. The graphics and presentation are pleasing and the organization of the site makes it easy to use
Great site! very well organized, and a nice look.
Very interesting site. Thanks of us all to Dr. Brady and his group of researchers. Excellent job. Can there be an area for more pictures of the Brady staff that work behind the scenes in this great contribution to medicine??
This is great! I'm planning to put a link to the exhibit on the webpages of the National Gaucher Foundation <http://www.gaucherdisease.org>. I'm just trying to decide on the best spot.
This was a very interesting presentation and the heads up via e-mail made it easy to access. Keep up the good work.
Nicely done. This presents an overview of the disease and the scientist, both easily understood descriptions. The inclusion of the glossary is a good idea. I hope that you have more of these planned and that the public learns about them.
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