Movement disorders are a growing field in Neurology, with a strong translational value. Although expert assessment is required for managing patients with movement disorders, the number of patients greatly exceeds the availability of expert centers. Referrals are needed to manage many complex cases with diverse diagnostic and therapeutic needs. At the same time, basic research is providing new information that directly influences clinical practice in the field of movement disorders. Furthermore, several movement disorders currently have multiple candidate therapeutics or devices ready for testing in clinical trials, and thus trial readiness for specific cohorts has become an issue of high importance.
A coordinated effort at an international level is required to improve the sharing of knowledge and best practices regarding network formation, operation and achieving trial readiness. This effort will provide experience, expertise, and exemplary solutions from existing disease networks that already provide broad partnerships. Mutual learning, as well as brokering expert knowledge for potentially novel networks, will be key goals of this Research Topic.
We therefore welcome submissions of manuscripts on the topic of networks focused on and/or contributing to trial readiness in the field of movement disorders. Manuscripts may address the following points:
- Network structure
- Availability of respective RND cohorts for trials
- Availability of high quality RND registries including standard procedure for
o Consenting of patients;
o Data capture based on a consented disease relevant data set;
o Quality monitoring;
o Data protection;
o Sharing of data;
o Accessing data.
- Tools to select appropriate participants for trials
- Sensitive, reliable, valid and responsive tools to measure the effects of interventions including
o Clinical outcome assessment (COA) measures (including clinical scales and composite measures, clinician-, observer- and patient-reported outcome measures, and quantitative performance outcome measures);
o Biomarkers (diagnostic, prognostic, predictive, pharmacodynamic or others).
- Consistent and reproducible use of validated COA measures or biomarkers at multiple clinical sites
Movement disorders are a growing field in Neurology, with a strong translational value. Although expert assessment is required for managing patients with movement disorders, the number of patients greatly exceeds the availability of expert centers. Referrals are needed to manage many complex cases with diverse diagnostic and therapeutic needs. At the same time, basic research is providing new information that directly influences clinical practice in the field of movement disorders. Furthermore, several movement disorders currently have multiple candidate therapeutics or devices ready for testing in clinical trials, and thus trial readiness for specific cohorts has become an issue of high importance.
A coordinated effort at an international level is required to improve the sharing of knowledge and best practices regarding network formation, operation and achieving trial readiness. This effort will provide experience, expertise, and exemplary solutions from existing disease networks that already provide broad partnerships. Mutual learning, as well as brokering expert knowledge for potentially novel networks, will be key goals of this Research Topic.
We therefore welcome submissions of manuscripts on the topic of networks focused on and/or contributing to trial readiness in the field of movement disorders. Manuscripts may address the following points:
- Network structure
- Availability of respective RND cohorts for trials
- Availability of high quality RND registries including standard procedure for
o Consenting of patients;
o Data capture based on a consented disease relevant data set;
o Quality monitoring;
o Data protection;
o Sharing of data;
o Accessing data.
- Tools to select appropriate participants for trials
- Sensitive, reliable, valid and responsive tools to measure the effects of interventions including
o Clinical outcome assessment (COA) measures (including clinical scales and composite measures, clinician-, observer- and patient-reported outcome measures, and quantitative performance outcome measures);
o Biomarkers (diagnostic, prognostic, predictive, pharmacodynamic or others).
- Consistent and reproducible use of validated COA measures or biomarkers at multiple clinical sites
