We are thrilled to announce a very important step in advancing the research and care of individuals with 4p-. After many years of hard work from the 4p- Support Group, an international patient registry is officially underway. A patient registry is an online database that stores important information in a systematic way and can be queried into data …reports. This will make a huge impact on our community because we will not only be able to define 4p- more accurately, but also answer the questions many of us have, such as, “What percentage of affected individuals have seizures, sleep disorders, or renal failure? What treatments work best for seizures, sleep difficulties, or ADHD?” By defining the syndrome more effectively, we can better educate our families and in turn the medical community about 4p-. The patient registry’s long range goal is to determine effective treatments to provide a better future for all our loved ones with 4p-.
Participation will be completely voluntary and will begin at our national conference in Harrisburg, PA this July. At the conference, we will have a special session about the registry, where we will answer any of your questions. We will also be posting updates on Facebook. By participating in this registry, families will play a pivotal role in helping our community, medical professionals, and potentially researchers gain a better understanding of this complex syndrome. Participating in the registry is the single most important thing families can do to help build a better future for those affected by 4p-. We hope you are as excited as we are. Thank you all for your support.