Patient registry

Contribute your data to research

Thank you for choosing to share your data. Every result you add turns scattered patient experiences into real evidence — helping advance the science and push toward a cure for AATD that doesn’t overlook the MZ patient.

Create a secure account to add your lab results and help build the evidence base for Alpha-1 MZ. Everything you share is pseudonymised, kept under strict access controls, and you can withdraw at any time.

Email address Password

At least 12 characters. Use a passphrase you don't use elsewhere.

Confirm password

Name to show in your account (optional)

Your consent

The Foundation may email me about research using my data, future studies, or other registry-related matters. Optional; I can change this in Account and consent. Email me one friendly reminder if I leave a survey unfinished for more than 24 hours. Optional; reminders can be turned off in Account and consent.

Required. I consent to my data being processed in the Alpha-1 MZ Foundation registry for research purposes, on the terms in the Participant Information Sheet.

Contact me about future studies.

Allow my pseudonymised data to be released to researchers approved by the Data Access Committee.What is the Data Access Committee? A committee of the Alpha-1 MZ Foundation that reviews every research request before any data is shared. It only approves research that serves people with Alpha-1, shares no more data than the study needs, and requires the researcher to sign an agreement that forbids any attempt to find out who you are. Your name and contact details are never shared.

Allow aggregate findings (no individual data) to be included in published research.

The newsletter is a separate, optional sign-up offered after your account is created.