Complete Your Registry Profile

Thank you for registering with the PRRT2 Foundation. This second, more detailed questionnaire helps us understand patterns across the PRRT2 community and strengthens the research and advocacy work we do on your behalf. It's entirely voluntary and there's no deadline.

Detailed Registry

Your Information

Please use the same name and email you used when you first registered, so we can match this to your existing record.

First Name

Last Name

Diagnosis & Genetics

Age of Onset (years, optional)

Age at Diagnosis (years, optional)

Diagnosis confirmed by genetic testing

Family history of PRRT2

PRRT2 Variant (optional)

Variant Classification (optional)

Diagnosing Physician Name (optional)

Testing Lab Name (optional)

Symptoms

Phenotypes (select all that apply, optional)

BFIE (Benign Familial Infantile Epilepsy)

Epilepsy (non-infantile onset)

PKD (Paroxysmal Kinesigenic Dyskinesia)

PED (Paroxysmal Exertional Dyskinesia)

HM (Hemiplegic Migraine)

Persistent Dysphonia

Dystonia

Other

Treatment

Current Medication (optional)

Medication Response (optional)

Other Registries

CoRDS Status (optional)

RARE-X Status (optional)

Your privacy matters. Information submitted here is used internally by PRRT2 Foundation to coordinate patient outreach and support research and advocacy. It is never sold or shared. See our Privacy Policy for details.