Osteoporosis, bone & mineral

Diagnosis, treatment, and management recommendations for cleidocranial dysplasia: A modified Delphi panel

J Bone Miner ResPublished Modified Delphi consensus study

Authors' conclusion

The expert consensus reached in this panel informs the first comprehensive best practice guidelines for patients, their family members, and healthcare providers to diagnose, treat, and manage the dental/orthodontic and other medical complications of cleidocranial dysplasia.

Study context

Population
Multidisciplinary experts with experience treating patients with cleidocranial dysplasia; recommendations primarily for adults and children (≥2 yrs of age)
Participants
13 experts
Outcome
Consensus on SoC recommendations: ≥70% agreement or disagreement for Likert-scale statements or ≥70% of experts selecting the same response for a multiple-choice option
Methodological details3-round survey, multidisciplinary expert panel, targeted literature review, steering committee of 2 experts, pre-defined consensus threshold ≥70%, Expert discussion after Round 2 refined statements for Round 3; steering committee reviewed statements before each round
  • 3-round survey
  • Multidisciplinary expert panel
  • Targeted literature review
  • Steering committee of 2 experts
  • Pre-defined consensus threshold ≥70%
  • Expert discussion after Round 2 refined statements for Round 3; steering committee reviewed statements before each round

Recommendations

As reported in the abstract

Statements reaching consensus
Round 1: statements reaching consensus
79% (n/N = 26/33)
Round 2: statements reaching consensus
91% (n/N = 21/23)
Round 3: statements reaching consensus
100% (n/N = 12/12)
Overall standard of care (SoC) recommendations reaching consensus
37
Recommendations on diagnosis
9
Recommendations on treatment and management
24
Treatment and management: dental/orthodontic
7
Treatment and management: other medical (non-dental/orthodontic)
17
Recommendations on care providers
4

Original publication

Diagnosis, treatment, and management recommendations for cleidocranial dysplasia: A modified Delphi panel. J Bone Miner Res. Published 8 January 2026. doi:10.1093/jbmr/zjag004

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