Pleuropulmonary blastoma/DICER1 Registry

Pleuropulmonary blastoma/DICER1 Registry Welcome to the International PPB/DICER1 Registry!

The Registry seeks to advance care for individuals with PPB and DICER1 related conditions through collection and shared of information and through development of new ways to find and treat these conditions The International Pleuropulmonary Blastoma (PPB)/DICER1 Registry is a resource, providing information on PPB, DICER1, and DICER1 associated conditions. Part of the Registry's objective is to enc

ourage the collection of data to seek the cause of PPB and its possible genetic links, as well as collaborate with physicians, patients and patient families from around the world. If you or your child or family member is diagnosed with a condition associated with DICER1 or found to have a DICER1 gene variation, we would be grateful for your participation in the Registry, for it is through the contributions patients and families, that much has been learned about these rare conditions.

Our mailing address has changed but our mission remains the same! The Registry is still at Children's Minnesota, just a ...
07/31/2025

Our mailing address has changed but our mission remains the same! The Registry is still at Children's Minnesota, just a few steps from our prior location. Our new mailing address is: 2545 Chicago Ave., Suite 515, Minneapolis, MN 55404.

Meet Brenya McNally, Clinical Research Associate for the International Pleuropulmonary Blastoma/DICER1 Registry!
07/09/2025

Meet Brenya McNally, Clinical Research Associate for the International Pleuropulmonary Blastoma/DICER1 Registry!

Meet Paige Mallinger, Senior Clinical Research Coordinator for the International Pleuropulmonary Blastoma/DICER1 Registr...
05/20/2025

Meet Paige Mallinger, Senior Clinical Research Coordinator for the International Pleuropulmonary Blastoma/DICER1 Registry!

Thank you to everyone who joined our DICER1 Registry Symposium & Family Meeting! This year we merged our Family Meeting ...
05/13/2025

Thank you to everyone who joined our DICER1 Registry Symposium & Family Meeting! This year we merged our Family Meeting and DICER1 Scientific Symposium into one event. We welcomed over 200 patients, families, health care professionals and researchers from around the world to discuss the latest updates to our DICER1 surveillance guidelines and share the Registry's DICER1 Tumor Predisposition Surveillance Guidelines Patient Education document. If you haven't yet received a copy of our education document, connect with us at dicer1@childrensmn.org to learn more.

The DICER1 Registry Symposium and Family Meeting is now live on Zoom. We look forward to having you join us today! Email...
05/06/2025

The DICER1 Registry Symposium and Family Meeting is now live on Zoom. We look forward to having you join us today! Email DICER1@childrensmn.org or call 612-813-7121 if you require any technical support.

Join us tomorrow for the DICER1 Registry Symposium and Family Meeting. We will be gathering virtually over Zoom from 9:0...
05/05/2025

Join us tomorrow for the DICER1 Registry Symposium and Family Meeting. We will be gathering virtually over Zoom from 9:00 a.m. to 1:00p.m. CDT to discuss DICER1 surveillance guideline updates, details about DICER1 testing, and novel approached. We hope to have you there!

Patient & Family Registration Link: https://us06web.zoom.us/webinar/register/WN_CksiUz5GTsu3BZ4WTZHOOA #/registration

Professional Registration Link (this link is required for any professional seeking continuing education credits): https://cmn.education.childrensmn.org/clinician-education/L050625VirtualDICER1Symposium

05/04/2025

We look forward to seeing you soon!

Just two days away! We are excited to share updates related to the DICER1 surveillance guidelines, pass along our DICER1...
05/04/2025

Just two days away! We are excited to share updates related to the DICER1 surveillance guidelines, pass along our DICER1 surveillance education document, and discuss a variety of DICER1 related topics.

Patient & Family Registration Link: https://us06web.zoom.us/webinar/register/WN_CksiUz5GTsu3BZ4WTZHOOA #/registration

Professional Registration Link (this link is required for any professional seeking continuing education credits): https://cmn.education.childrensmn.org/clinician-education/L050625VirtualDICER1Symposium

We will be discussing the recently updated DICER1 surveillance guidelines, including our newly developed DICER1 surveill...
05/02/2025

We will be discussing the recently updated DICER1 surveillance guidelines, including our newly developed DICER1 surveillance education document, at the DICER1 Registry Symposium and Family Meeting. Join us on May 6th to learn more.

Patient & Family Registration Link: https://us06web.zoom.us/webinar/register/WN_CksiUz5GTsu3BZ4WTZHOOA #/registration

Professional Registration Link (this link is required for any professional seeking continuing education credits): https://cmn.education.childrensmn.org/clinician-education/L050625VirtualDICER1Symposium

This year, we are merging our DICER1 Scientific Symposium and Family Meeting (typically held in August) into one event -...
05/01/2025

This year, we are merging our DICER1 Scientific Symposium and Family Meeting (typically held in August) into one event - the DICER1 Registry Symposium and Family Meeting to bring patients, families, healthcare professionals, and researchers together to discuss our recently updated DICER1 surveillance guidelines. We hope to see you there May 6th!

Patient & Family Registration Link: https://us06web.zoom.us/webinar/register/WN_CksiUz5GTsu3BZ4WTZHOOA #/registration

Professional Registration Link (this link is required for any professional seeking continuing education credits): https://cmn.education.childrensmn.org/clinician-education/L050625VirtualDICER1Symposium

Address

Minneapolis, MN

Opening Hours

Monday 9am - 5pm
Tuesday 8am - 4:30pm
Wednesday 9am - 4:30pm
Thursday 5am - 6am
8am - 4:30pm
Friday 8am - 5pm

Telephone

+16128137121

Website

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Introduction to the PPB DICER1 Registry

The International Pleuropulmonary Blastoma (PPB)/DICER1 Registry is a resource, providing information on PPB, DICER1, and DICER1 associated conditions. Part of the Registry's objective is to encourage the collection of data to seek the cause of PPB and its possible genetic links, as well as collaborate with physicians, patients and patient families from around the world.

If you or your child or family member is diagnosed with a condition associated with DICER1 or found to have a DICER1 gene variation, we would be grateful for your particpation in the Registry, for it is through the contributions patients and families, that much has been learned about these rare conditions.