ORPHA:138044 Q87.0
Conditions
Interventions
Group 1: Registry for the prospective evaluation of children with Robin sequence in various European health care centres specialised in the treatment of Robin sequence. The registry is an observationa
Sponsors
Tuebingen University Hospital
Eligibility
Sex/Gender
All
Age
No minimum to 12 Months
Inclusion criteria
Inclusion criteria: - Diagnosis of Robin sequence (isolated or syndrome-associated), a combination of glossoptosis, micrognathia and upper airway obstruction ? all three criteria must be met - Age at inclusion maximum 12 month - Any gestational age and any sex - Parent or guardian, who provided consent
Exclusion criteria
Exclusion criteria: Participants whose parents/guardians are unable to understand the study protocol or are unable to give informed consent, for example due to a language barrier.
Design outcomes
Primary
| Measure | Time frame |
|---|---|
| Objective of the registry is to collect data on characteristics, applied therapy, adverse events, medical follow-up and outcome of children with Robin sequence, with the intention to gain a better understanding of Robin sequence and its therapeutic options an outcomes. | — |
Secondary
| Measure | Time frame |
|---|---|
| The registry intents to • to collect more information about the disease. • to improve the quality of currently applied treatment options. • to determine the frequency of complications and adverse events. • to compare diagnostic and therapeutic procedures in affected patients across Europe. • to evaluate the effects of the different therapy options using several parameters such as MOA(H)I or z-scores at different time points. • to determine the long-term prognosis of the condition. • to generate a database for future research questions. • to enhance international cooperation. | — |
Countries
France, Germany, Netherlands, Switzerland, United Kingdom
Contacts
Public ContactMargret Fritz, B.A.
Center for Cleft Palate & Craniofacial Malformations; Tübingen University Hospital
Outcome results
None listed