by Mark Dunning
The registry idea is clearly a hit. We’ve gotten more comments on this posting than any other. Rather than respond to each individual comment (and since I clearly forgot some important details), I figured I would do another post with answers to the most common questions.
Who would administer the registry?
The intention right now is to have the Coalition for Usher Syndrome Research build and administer the database, though that could change. The Coalition is a 501(c)3 not for profit organization dedicated to supporting Usher syndrome research by engaging families in the process. The Coalition has a web site [www.usher-syndrome.org] (which is how many of you found this blog) and already maintains a database for the Usher Syndrome Family Network. The intention would be to hire staff and to engage volunteers to administer and promote the registry.
Why not use an existing registry from a larger institution with more resources?
There are a number of reasons. 1) There are few Usher specific institutions out there and none with any real size. That means that we would be lumped in with other conditions where the goals of Usher families might not always be the top priority. 2) Universities, hospitals, and fund raising organizations all compete at some level. While most try to be open in their sharing of critical data, that’s not always the case. 3) Many of these larger institutions have a lot of rules governing the collection and sharing of data that might restrict or delay the availability of that data. We want to be quick and nimble. Remember, the goal here is to quicken the pace of research.
Who would ‘own’ the data and what entities would have access to this data?
The Coalition for Usher Syndrome Research is ultimately a family focused organization (6 of 11 board members either have Usher or have family members with Usher including, for purposes of full disclosure, me). The IRB would have a similar makeup. Usher families would determine the access to the data so Usher families would ultimately ‘own’ the data. As such, any legitimate researcher or support organization with a legitimate need would have access to the data. Of course, data sharing would have to meet HIPAA guidelines for confidentiality, but it’s hard to imagine a scenario where any legitimate organization with a desire to advance research that would help Usher families would be denied access to the data by those same families.
Great idea. How can I help?
Remember the first question about administering the database? Well, follow this logic: We won’t have to hire anyone if we get volunteers to do it. If we don’t have to hire anyone we don’t have to get the funding to hire someone. If we don’t have to fund a position that money can go to the development of the registry rather than to pay someone to manage it. And finally, if we don’t have to raise the money, we can focus on building it rather than paying for it. Make sense? So…
Volunteer to help administer the registry: We need people to help take questions about how to use the site, to schedule IRB meetings and set the agenda for those meetings, to take data requests from researchers and to help fill those requests, and to help those with low vision to enter their data whether it be online or over the phone or via a visit to a home to write it on paper. If you help administer it, the registry will begin paying dividends sooner
Volunteer to help with the design, testing, and quality assurance of the registry: When we begin building the system we’ll need families with Usher to help with the user interface design, to test the ease of use, and to ensure that everything works as intended.
Volunteer to promote the registry: The key to the success of the registry is getting families involved. To capture the information of every family we first need to let every family know about its existence and explain its importance. That’s going to take a lot of people spreading the word to make it happen.
Enter your data: Not just on day one, but going forward as well. We’ll most likely have new questionnaires coming online over time. The more you tell us about yourself, the more it helps us learn about the progression of the disease.
Donate to the cause: I hate to even mention this because it is not the intent of this blog to solicit funds. However, there are a lot of busy people out there who would prefer to help the effort monetarily. If you are one of them, you can contact me directly to discuss how you can help. I can be reached at firstname.lastname@example.org
Obviously that same e-mail works for volunteering as well, which, quite frankly is more important than the financial support.
Thanks to all those that submitted comments and keep them coming!