In 2017, Gaten Matarazzo helped form a charity; nine years later, its partners issued 37 care tips (Image Credit: Wikipedia and AI-generated)
A new study published online in the Journal of Bone and Mineral Research on January 8, 2026, marks an important development in that effort. Titled Diagnosis, treatment, and management recommendations for cleidocranial dysplasia: A modified Delphi panel , the research establishes 37 expert-consensus recommendations covering diagnosis, treatment and long-term medical care. The work involved specialists working with CCD Smiles, the nonprofit organisation Matarazzo and his family helped bring into formal operation in 2017, and researchers from Johns Hopkins and other institutions. In a November 2025 interview with Cero Magazine, Matarazzo explained that patients often had to depend on doctors who had treated only a handful of people with the condition. To address the lack of standardised guidance, a multidisciplinary panel of 13 experts conducted a three-round modified Delphi study. The research produced 37 recommendations covering three broad areas: diagnosis, treatment and management, and the healthcare professionals involved in patient care. Of these, nine recommendations focused on diagnosis, while 24 covered treatment and management. The latter included seven dental and orthodontic recommendations and 17 other medical recommendations.
He said he wanted medical professionals to have a reliable care plan explaining how to treat patients without taking steps that could cause harm or setbacks. Another important recommendation is that orthodontic treatment should be planned according to a patient’s dental development rather than simply their chronological age. The disorder is estimated to affect approximately one in a million people worldwide. Its rarity has made it difficult for patients and families to find doctors with sufficient experience in managing its different complications. The organisation focuses on raising awareness, supporting access to dental treatment and encouraging research. This method involves collecting expert opinions through repeated surveys and discussions until sufficient agreement is reached. The remaining four addressed care providers. The researchers described the findings as the first comprehensive best-practice recommendations to help patients, families and healthcare professionals understand and manage the condition. Specialists also recommended a phased approach to exposing unerupted teeth. Prosthetic options, including implants, bridges or dentures, may be considered for patients who cannot undergo or do not wish to pursue conventional orthodontic treatment.
The study also stresses that managing CCD requires cooperation between different medical specialists. Depending on a patient’s symptoms, their care team may include primary care doctors, dentists, orthodontists, geneticists, orthopaedic specialists, hearing specialists, endocrinologists and physical or occupational therapists. For Matarazzo and CCD Smiles, the research addresses a major gap that has affected people living with the disorder for years. The study also represents a significant step towards making care more consistent for people with a condition that remains unfamiliar to many healthcare providers.
The recommendations are intended to help doctors recognise the condition earlier, understand its complications and coordinate treatment rather than approaching each problem separately. they provide a shared medical reference for patients and professionals who previously had limited standardised guidance While the recommendations do not offer a cure.