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Pleuropulmonary blastoma/DICER1 Registry

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Minneapolis, MN
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 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 participation in the Registry, for it is through the contributions patients and families, that much has been learned about these rare conditions.

12/31/2025

The International PPB/DICER1 Registry is continuing to grow! We are so grateful to all the individuals and families for participating in the Registry which is based at Children's Minnesota and spans the globe. More than 1,000 children and adults have now enrolled in The Registry from 48 U.S. states, 64 countries and six continents. To learn more about participation, you can visit us here: https://www.ppbregistry.org/enroll/

12/08/2025

We are grateful to all of the Registry participants who complete the quality of life (QOL) surveys. These surveys were first suggested by parents of children with PPB to help answer some of the important questions that arise in daily life. The goal is to understand the impact of PPB and other DICER1-related cancers in kids and adults. December is Cancer-Related Fatigue Awareness Month, and we take this time to honor those who are walking and have walked through the many challenges of a cancer diagnosis.

11/28/2025

Happy Gratitude Month! Through the contributions of many Registry participants and their families, we have learned so much about these rare tumors. Your involvement is what makes these advancements possible, and we are forever grateful for your contribution to this research. With gratitude, The PPB/DICER1 Registry Team

11/25/2025

Did you know? Pleuropulmonary blastoma (PPB) is the most common form of pediatric lung cancer. Variants in the DICER1 gene have been linked to this rare diagnosis. In honor of Lung Cancer Awareness Month, learn more here: https://www.ppbregistry.org/ppb-overview/

09/12/2025

September is Cancer Awareness Month for ovarian cancer, childhood cancer and thyroid cancer. Each of these are a part of our ongoing research efforts to find more effective treatments. This is a good time to ensure you are up to date on DICER1 surveillance if indicated based on your medical history! Also please consider enrolling in our International PPB/DICER1 Registry to help us find a cure for PPB, SLCT and other DICER1-related cancers. Receive enrollment information today: https://www.ppbregistry.org/enroll/

08/07/2025

Thank you to the Fund for an amazing weekend of tennis and for 40 years of support of PPB/DICER1 research! This year's theme was 40-LOVE reflecting the longstanding commitment of this group to advancing outcomes for kids with cancer and their families. Thanks to all for their amazing work, commitment and generosity!

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.

07/09/2025

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

05/20/2025

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

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.

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.

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

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

http://www.PPBregistry.org/

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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.