I’ve heard JDRF staffers lament on several occasions about the lack of a national registry for people with type 1 diabetes. Speaking once with the Executive Director of our local chapter, she expressed how frustrating it was for her that they didn’t have a way to reach out to new families. Lacking an optional registry and due to HIPAA regulations, the hospital distributes their Bag of Hope and JDRF must wait to see if the family ever contacts them or attends an event.
Diabetes related clinical and market research is much more difficult without a registry since it’s nearly impossible to identify the patient population. That’s why we were thrilled when our pediatric endocrinology office agreed to distribute a daycare survey to their patient families on our behalf – with a few catches. They made it very clear up front that this offer was only on the table since we are planning to create the daycare as a non-profit organization.
Obviously they couldn’t provide us with patient information directly, but at least initially they agreed to allow us to include an optional contact form at the end of the survey. If families wanted us to reach out to them about the survey, it would provide a ready-made customer list if we are able to pursue opening a diabetes daycare.
The entire plan was almost nixed when the hospital’s Institutional Review Board (IRB) caught wind of the project. Any form of research must be cleared by the IRB, and they had a number of concerns and stipulations which almost did us in. Fortunately, the endo group is very supportive of our initiative and went way out of their way to help smooth the way. We had to make a few concessions, but are back on track. Originally they were going to mail surveys to all of their families with a child under 10 years of age. Now they would have to distribute them during clinic hours over the next few months, but could not collect them. The surveys would be provided with a pre-addressed stamped envelope directed to our team. The optional patient contact form had to be removed; there would be no opportunity for families to identify themselves to us. Also, a few questions had to be modified slightly, but this was inconsequential.
We’ve started receiving surveys back and so far the results are in line with our expectations. Other families are struggling with the same issues we are and would welcome a specialized daycare, so long as it is affordable and conveniently located.
NOTE: Diabetes Mine has an article about a national registry effort being spearheaded by the Helmsley Charitable Trust if you’re looking for more information.