Syngap families can join the registry here.

SYNGAP1 - Data Collection Program

SYNGAP1 patients, families, and communities are excited to participate in data collection to expand and improve medical research. By coming to this site, you can begin the first step in making your patient information available to researchers. By generating the most comprehensive SYNGAP1 Data Collection Program, we can accelerate research and the development of new drugs, devices, or other therapies. Only you hold the key to unlock future discoveries.

Why Should You Participate?

The surveys you will take in the SYNGAP1 Data Collection Program are critical to the drug and treatment development process. Our goal is to make the process as easy as possible for you. The SYNGAP1 Data Collection Program uses a collaborative technology platform powered by RARE-X. RARE-X is a nonprofit created to accelerate rare disease research, treatments, and cures by removing barriers for data collection and sharing. By participating, you are…

  • Informing researchers how a disease or condition changes over time
  • Enabling better data to use in clinical trials
  • Reducing the time it takes to study new medicines in clinical trials
  • Speeding up the time to get therapeutics to patients
  • Enabling the use of data as a placebo (instead of actual patients) in a clinical trial

How it Works:

  • No clinic visits required, and there is no cost to you
  • Patients and Caregivers retain full control over who has access to  patients’ health information
  • With your consent, clinicians (doctors), researchers, and drug development companies (biopharma) can access de-identified data to aid research
  • Enrolling in the SYNGAP1 Data Collection Program requires minimal time, and you can come back to the site at your convenience to update your information

Become a SYNGAP1 data sharer to help advance research and accelerate treatments. Please join us.

You may also like

64 - SYNGAP Study - Seizure Tracker

Invitae/Ciitizen & Praxis

63 - Targeting alternative splicing of SYNGAP1 using antisense oligonucleotides

Ben Prosser, PhD

University of Pennsylvania

23 - Cognition, behavior & clinical trials in SYNGAP1

Andrew Stanfield, PhD

Univ. of Edinburgh