The Hyper IgM Foundation Blog
UPDATE ON THE USIDNET MEETING WE ATTENDED
On January 29th, I had the honor to represent the Hyper IgM patient community at the U.S. Immunodeficiency Network (USIDNET)’s Annual Meeting. After speaking about my own personal experience as a parent of a child with Hyper IgM Syndrome, I then presented the work the Hyper IgM Foundation is doing on behalf of the families we serve to the immunologists and industry leaders attending the conference. It was a great meeting, and I learned so much about the intricacies of running and maintaining a consented patient database, and the importance that all the stakeholders bring to the joint effort. It was especially thrilling and encouraging to discover that there is so much interest in the Hyper IgM patient community.
I shared some of the goals our patient community has in terms of the next stage of research with the working group of around 45 immunologist and industry leaders). I mentioned how engaged the Hyper IgM Foundation is with our patient community, and how supportive the patients are of each other. Everyone was so glad to hear that there is an active and engaged support group for Hyper IgM families, and the physicians promise to send their patients our way. I told them that we are eager to get more of our patient base involved in upcoming studies and the database. I am going to push for this and hopefully we can start seeing those numbers go up.
There are currently approximately 150 Hyper IgM patients registered in the USIDNET. Around half of them are legacy records from before there was an USIDNET. I had a long conversation with one of the doctors who compiled data from the USIDNET registry regarding Hyper IgM and is about to publish her study. Unfortunately, a lot of the data on HIGM patients is outdated or limited. As a foundation we will work towards getting more of our patient population signed up to have records updated in the USIDNET, and the upcoming study the Hyper IgM Foundation anticipates conducting with the IDF this summer will help fill in some of the gaps.
We plan to have a sit down soon with VP of Research at the IDF to go over the PI Connect system they have to for patients to consent for their records to be shared from their physician to the USIDNET. For now, if you are a Hyper IgM patient or parent and want to start the process I recommend signing up for PIConnect here: http://goo.gl/viQag7 by also signing up for the ePHR system.
Stay tuned for more updates!
Watch IDF’s latest video to learn how you can track your health and help advance research with IDF ePHR and IDF PI CONNECT. To learn more, visit http://primaryimmune.org/services/idf-ephr/ #IDFePHR#IDFPICONNECT