RRP ISA Survey (Portal)
Online Survey for Patients and Physicians
Our database is useful in helping the RRP community keep better informed about trends in RRP and also in helping us help you on an individual basis. Please complete it if you have not yet done so, or if it has been more than two years since you last did. We have two survey instruments and one results page. It may look like a lot of questions, but it takes most people only 10-15 minutes to complete it.
Data is treated as confidential unless patients or their guardians have explicitly given us permission to share it with other patients or with the RRP research community. The aggregated display open to the public does not display any personal client identifiers. The only items that are displayed are anonymous answers to multiple choice questions, not comments or other text fields such as names, e-mail addresses, etc.
Online Survey Q&A:
Q: What about privacy? Can any data I submit be accessed through an internet search?
A: We have made the database as secure as possible, and no, our database is absolutely NOT accessible through internet search engines. All data that is transmitted is encrypted to the same very high privacy and security standards (https://) used in online personal banking. We do not give the data out to *anyone* without the respondent's explicit permission, and even if we have secured that permission, we limit disclosure to RRP researchers and/or other patients, depending on what explicit permissions we have received.
Q: Can I use a pseudonym (fictitious name)?
A: We want to make completion of the online survey as easy as possible. We'd very much prefer that you use your real name, but if you don't want to, then you may use a pseudonym, which will make your survey "anonymous." It could be any combination of letters or numbers, including a birth date, an e-mail address, etc. This self-assigned name will be your ongoing "identifier" for the purpose of the database. As long as your ongoing communications with us consistently reference the same set of identifiers you used on the survey, all will be well. That way, if you should ever contact us, we would be able to find you or your child in the system. We don't want you forgetting your identifier and having to register again, because that would mean that you would be creating duplicate data. This, in turn, would adversely affect the reliability of the database. So if you go this route, you will be expected to remember [i.e., write down] your self-assigned name. It's like a password. It will be the name you will use throughout your association with the Intl RRP ISA Center.
In ca. February/March 2008 onwards, you will be able to revise past surveys and any survey completed from that date. Save the link the system sends you and you will easily return to your original survey for editing.
A: No. The International RRP ISA Center is an independent organization. Our surveys and database are distinct from that of any other organization.
Q: There are "required" answers. This feels unnecessarily intrusive.
A: Few fields are required and most questions relating to sensitive questions are "optional." While we encourage people to answer all the questions, that's a matter of personal choice. We thank you in advance for answering as many questions as you are comfortable with.
Q: Data entered a few years ago needs to be updated. How do I do this?
Duplicate surveys from the same person are not to be submitted without letting us know. We are working at automating this process and will let you edit surveys in or around February/March 2008.