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Research

Medication adherence during adjunct therapy with statins and ACE inhibitors in adolescents with type 1 diabetes

We report an overall good adherence to ACE inhibitors and statins during a clinical trial, although there was a clear decline in adherence over time

Research

Association of suicidal behavior with exposure to suicide and suicide attempt: A systematic review and multilevel meta-analysis

prior exposure to suicide and prior exposure to suicide attempt in the general population are associated with increased odds of subsequent suicidal behavior

Research

The Undiagnosed Diseases Network International: Five years and more

The Undiagnosed Diseases Network International was established with the major aims of providing diagnoses to patients

CDKL5 Publications

Publications from 2017 dating back to 2004 of CDKL5 researchers.

Feeding experiences and growth status in a Rett syndrome population

We set out to describe the feeding difficulties and nutrition of girls with Rett syndrome and to examine what factors may be influencing their nutrition.

Clinical severity and X-chromosome inactivation

For this study, we examined how Rett syndrome characteristics can be affected by X-inactivation for 2 of the common types of mutation - p.R168X and p.T158M.

Longitudinal hand function in Rett syndrome

Therefore, we used video data to examine changes in hand function over time. We also investigated what other factors might influence these changes.

Parental perspectives on the communication abilities of their daughters with Rett syndrome

We interviewed 17 parents with a daughter with Rett syndrome to gain their perspectives on how their daughter communicates and barriers.

Our Research

We aim to share our research findings with families so that they may better understand Rett syndrome and the future for their family.