Manila Boarini

Bologna, Italy

Last Updated: 09/26/2026

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Found 25 publications

Blended adapted sailing therapy with telerehabilitation for rare skeletal disorders: protocol for a pilot randomised controlled feasibility trial in Italy (PaS2-EXTEND).

Blended adapted sailing therapy with telerehabilitation for rare skeletal disorders: protocol for a pilot randomised controlled feasibility trial in Italy (PaS2-EXTEND).

Journal: BMJ open

Published: May 18, 2026

A Dialogic Participatory Model Between Professionals and Patients for the Co-Creation of Transitioning Care Management Programmes in Rare Bone Diseases.

A Dialogic Participatory Model Between Professionals and Patients for the Co-Creation of Transitioning Care Management Programmes in Rare Bone Diseases.

Journal: Health expectations : an international journal of public participation in health care and health policy

Published: May 14, 2026

Osteogenesis imperfecta: a registry-based study of the clinical symptoms of disease in a large cohort of Italian patients.

Osteogenesis imperfecta: a registry-based study of the clinical symptoms of disease in a large cohort of Italian patients.

Journal: Frontiers in endocrinology

Published: March 05, 2026

Opportunities and challenges in automated coding of electronic health records: a pilot study for rare disease registries.

Opportunities and challenges in automated coding of electronic health records: a pilot study for rare disease registries.

Journal: Frontiers in digital health

Published: February 09, 2026

Feasibility and safety of sailing based rehabilitation for rare skeletal disorders using wearable sensors and patient reported outcomes.

Feasibility and safety of sailing based rehabilitation for rare skeletal disorders using wearable sensors and patient reported outcomes.

Journal: Scientific reports

Published: May 27, 2025

Involvement of patient organisations in research activities: actions taken and lessons learned in a clinical research study for osteogenesis imperfecta.

Involvement of patient organisations in research activities: actions taken and lessons learned in a clinical research study for osteogenesis imperfecta.

Journal: Orphanet journal of rare diseases

Published: June 26, 2024

SATURN: assessing the feasibility of utilising existing registries for real-world evidence data collection to meet patients, regulatory, health technology assessment and payer requirements.

SATURN: assessing the feasibility of utilising existing registries for real-world evidence data collection to meet patients, regulatory, health technology assessment and payer requirements.

Journal: Orphanet journal of rare diseases

Published: May 14, 2024

The Role of the European Reference Network for Rare Bone Diseases (ERN BOND) and European Registries for Rare Bone and Mineral Conditions (EuRR-Bone) in the Governance of the Management of Rare Bone and Mineral Diseases.

The Role of the European Reference Network for Rare Bone Diseases (ERN BOND) and European Registries for Rare Bone and Mineral Conditions (EuRR-Bone) in the Governance of the Management of Rare Bone and Mineral Diseases.

Journal: Calcified tissue international

Published: April 30, 2024

Nature-based interventions for individuals with rare skeletal disorders: evaluation of a 5-day sailing program on health-related quality of life.

Nature-based interventions for individuals with rare skeletal disorders: evaluation of a 5-day sailing program on health-related quality of life.

Journal: Scientific reports

Published: April 30, 2024

Health-related quality of life and associated risk factors in patients with Multiple Osteochondromas: a cross-sectional study.

Health-related quality of life and associated risk factors in patients with Multiple Osteochondromas: a cross-sectional study.

Journal: Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation

Published: January 08, 2024

Osteogenesis imperfecta: a cross-sectional study of skeletal and extraskeletal features in a large cohort of Italian patients.

Osteogenesis imperfecta: a cross-sectional study of skeletal and extraskeletal features in a large cohort of Italian patients.

Journal: Frontiers in endocrinology

Published: September 22, 2023

Project SATURN- a real-world evidence data collaboration with existing European datasets in Osteogenesis Imperfecta to support future therapies.

Project SATURN- a real-world evidence data collaboration with existing European datasets in Osteogenesis Imperfecta to support future therapies.

Journal: Orphanet journal of rare diseases

Published: August 11, 2023

Showing 1-12 of 25

Last Updated: 09/26/2026