THE COMPCURE STUDY and Network 

Because these diseases are extremely rare and patients can present with highly varied clinical symptoms, there is very little data available regarding effective treatments. This makes research and clinical studies essential to better understand these conditions. Collecting data through patient registries, biobanks, and biopsy image archives is crucial for advancing knowledge and developing targeted therapies for this rare group of diseases.

To address this urgent need, the CompCure Association was established as a Danish non-profit organization founded by parents of a child affected by IC-MPGN. Its mission is to support research, foster collaboration, and develop resources to improve the diagnosis, treatment, and outcomes for individuals living with IC-MPGN and C3G.

CompCure is dedicated to improving the lives of patients by building a network of individuals affected by these diseases, facilitating education for clinicians to enable earlier and more accurate diagnoses, and empowering patients of all educational and socioeconomic backgrounds to better understand their condition. Additionally, CompCure aims to enhance access to therapies and clinical trials when available, ensuring equitable opportunities for all patients.

What Should I Do If I Want to Take Part in the CompCure Study?

If you are interested in participating in the CompCure Study, here are the steps you can take:

Speak to Your Doctor: start by discussing your interest in the study with your nephrologist or healthcare provider. They can guide you on whether participating is suitable for you.

Contact the CompCure Team: Reach out to the CompCure Association directly via email, phone, or their website. The team will provide you with detailed information about the study, including eligibility criteria, the enrollment process, and what participation involves.

Website: www.CompCure.org

By joining the CompCure Study, you become part of an important effort to improve diagnosis, treatment, and outcomes for individuals living with IC-MPGN and C3G. Your involvement could make a meaningful difference for current and future patients.

Why should I be part of the CompCure Study?

Medical research relies on collecting sufficient data to generate meaningful insights. The more people who participate in a study, the more reliable and accurate the results become. This is particularly challenging in rare diseases like IC-MPGN and C3G, where the patient population is small.

The data collected in the CompCure Study serves several important purposes:

Understanding the Disease: It sheds light on the natural progression of the disease and its impact over time.

Advancing Diagnosis and Prognosis: By analyzing data, researchers aim to develop better diagnostic tools and improve the ability to predict disease outcomes.

Personalized Treatments: It supports the creation of tailored, targeted therapies to meet the unique needs of each patient.

Evaluating Treatments: It helps determine the effectiveness and safety of treatments, while also identifying approaches that may be ineffective or harmful.

Ultimately, your participation contributes to research that aims to improve the quality of life for everyone affected by IC-MPGN and C3G. By taking part, you’re helping to drive progress toward better care and outcomes for all patients.

Patient and caregiver community

CompCure is establishing a global community for individuals and families affected by C3G and IC-MPGN. If you are interested in joining, please contact us through our website. You can also follow up on Facebook, Instagram and LinkedIn.