Yllka Kodra

Rome, Italy

Last Updated: 09/26/2026

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Found 25 publications

Gender and burden differences in family caregivers of patients affected by ten rare diseases.

Gender and burden differences in family caregivers of patients affected by ten rare diseases.

Journal: Annali dell'Istituto superiore di sanita
Published: June 20, 2023

The Quality Evaluation of Rare Disease Registries-An Assessment of the Essential Features of a Disease Registry.

The Quality Evaluation of Rare Disease Registries-An Assessment of the Essential Features of a Disease Registry.

Journal: International journal of environmental research and public health
Published: September 15, 2021

Reflections on the Importance of Cost of Illness Analysis in Rare Diseases: A Proposal.

Reflections on the Importance of Cost of Illness Analysis in Rare Diseases: A Proposal.

Journal: International journal of environmental research and public health
Published: December 07, 2020

Rare Pathogenic Copy Number Variation in the 16p11.2 (BP4-BP5) Region Associated with Neurodevelopmental and Neuropsychiatric Disorders: A Review of the Literature.

Rare Pathogenic Copy Number Variation in the 16p11.2 (BP4-BP5) Region Associated with Neurodevelopmental and Neuropsychiatric Disorders: A Review of the Literature.

Journal: International journal of environmental research and public health
Published: November 03, 2020

Shaping the Future of Rare Diseases after a Global Health Emergency: Organisational Points to Consider.

Shaping the Future of Rare Diseases after a Global Health Emergency: Organisational Points to Consider.

Journal: International journal of environmental research and public health
Published: September 29, 2020

The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes.

The EuRRECa Project as a Model for Data Access and Governance Policies for Rare Disease Registries That Collect Clinical Outcomes.

Journal: International journal of environmental research and public health
Published: September 10, 2020

Social Economic Costs, Health-Related Quality of Life and Disability in Patients with Cri Du Chat Syndrome.

Social Economic Costs, Health-Related Quality of Life and Disability in Patients with Cri Du Chat Syndrome.

Journal: International journal of environmental research and public health
Published: July 17, 2020

Clinical characteristics of individuals with Down syndrome deceased with CoVID-19 in Italy-A case series.

Clinical characteristics of individuals with Down syndrome deceased with CoVID-19 in Italy-A case series.

Journal: American journal of medical genetics. Part A
Published: June 23, 2020

Syringomyelia and Chiari Syndrome Registry: advances in epidemiology, clinical phenotypes and natural history based on a North Western Italy cohort.

Syringomyelia and Chiari Syndrome Registry: advances in epidemiology, clinical phenotypes and natural history based on a North Western Italy cohort.

Journal: Annali dell'Istituto superiore di sanita
Published: April 04, 2020

Primary Sclerosing Cholangitis: Burden of Disease and Mortality Using Data from the National Rare Diseases Registry in Italy.

Primary Sclerosing Cholangitis: Burden of Disease and Mortality Using Data from the National Rare Diseases Registry in Italy.

Journal: International journal of environmental research and public health
Published: March 20, 2020

Recommendations for Improving the Quality of Rare Disease Registries.

Recommendations for Improving the Quality of Rare Disease Registries.

Journal: International journal of environmental research and public health
Published: June 28, 2018

Data Quality in Rare Diseases Registries.

Data Quality in Rare Diseases Registries.

Journal: Advances in experimental medicine and biology
Published: December 08, 2017
Showing 1-12 of 25

Last Updated: 09/26/2026