Registering with SLC1A4 will help to keep you up-to-date on the latest information regarding ongoing research.
Researchers have created a registry questionnaire for individuals with SLC1A4.
The registry is an important tool to help researchers gain a better understanding of SLC1A4 syndrome and ultimately develop more effective treatment options. If you or your child has been diagnosed with SLC1A4, your participation could help advance the knowledge of SLC1A4 syndrome!
In creating and maintaining a meaningful registry of patients with SLC1A4 syndrome, our shared goals are to better understand the full range of clinical features that are associated with SSLC1A4 syndrome and to provide a resource of natural history data. As the promise of gene-specific medication is now on the horizon, it is critical that the SLC1A4 syndrome phenotype be a well defined so that there can be clear goals and outcomes to measure in any future clinical trial.
How the Registry is Helping?
- Researchers will be better able to define the range of medical and developmental features associated with SSLC1A4 syndrome. This may help doctors provide more complete and accurate information for individuals and their families at the time of diagnosis and throughout their lives.
- Researchers may use the information to develop new treatments specific to SSLC1A4 syndrome and begin clinical trials for new or existing medications.
- Participants may learn more quickly about clinical trials when they become available.
Enroll in the Registry
Participation in the registry is easy. All we will ask of you is to answer some questions about your child’s medical history.
Get started now: