WELCOME to the HSAN1 Registry!
The Deater Foundation, Inc. has been contacted numerous times by researchers interested in HSAN1. We have worked with neurologists, geneticists, dermatologists, ophthalmologists, and others to organize interested persons with HSAN1 and sometimes their family members to participate in research studies and treatment trials.
Because we are a large family, this was usually accomplished with a chat with family members. Since the identification of the genetic mutation, the known pool of individuals affected by HSAN1 has increased.
We invite all of those impacted by this disease to join a Registry that will benefit both the research community and individuals with HSAN1.
The Registry is a collaboration between the Deater Foundation and the University of Massachusetts Chan Medical School (UMass Chan). The information you enter will be held securely in the internal UMass Chan website. Dr. Robert H. Brown, Jr. will have exclusive access to this information. The Deater Foundation and Dr. Brown have worked together for 44 years.
We encourage you to enter some basic information to participate in the Registry if you have been diagnosed with HSAN1, if you have any version of the gene mutation, or if you are caring for someone with HSAN1.
The purpose of the Registry it two-fold. First, researchers seeking to initiate a new study or treatment trial will have access to a data base of people with HSAN1. Second, if you agree to be contacted, you will have the opportunity to join a study to further knowledge of the disease or possibly engage in a treatment trial.
Dr. Brown will evaluate any researcher seeking information on persons with HSAN1 for potential participation in research and clinical trials. Registered individuals who have indicated interest will be contacted by the researcher. Those individuals who participated in the various L-serine studies will recognize the possible benefits of such studies. Any registered person will have the right to choose the information they wish to share and to participate or decline inclusion in the study or clinical trial.
Together, we can work to advance knowledge about HSAN1.
