Brain Associated Comorbidities Survey in Dystrophinopathies Survey Data

The "Brain Associated Comorbidities Survey in Dystrophinopathies Survey Data" dataset encompasses comprehensive survey results focused on understanding the prevalence and nature of brain-related comorbidities in individuals diagnosed with dystrophinopathies. Dystrophinopathies, primarily characterized by muscular dystrophy, often have accompanying neurological components, the exploration of which is the central aim of this dataset.

This dataset is derived from responses collected via SurveyMonkey, a popular online survey platform. The respondents consist of individuals diagnosed with dystrophinopathies, or their caregivers, providing firsthand information on their experiences and health status.

The primary objective of this dataset is to provide researchers and healthcare professionals with insights into the neurological aspects of dystrophinopathies. It aims to assist in the development of comprehensive care strategies, inform clinical practices, and contribute to ongoing research in neuromuscular disorders. The data is invaluable for epidemiological studies, for understanding patient experiences, and for shaping future therapeutic interventions.

The dataset is structured in a survey format with each entry representing an individual respondent. It includes both quantitative and qualitative data, encompassing multiple-choice questions, rating scales, and open-ended responses.

Major attributes include demographic information (age, gender, location), diagnosis details, neurological symptoms reported, severity and frequency of these symptoms, current treatment regimens, and any noted effectiveness or side effects of these treatments.

Data and Resources

Additional Info

Field Value
If 'Other,' Please Specify License
Rights Holder Stichting Kempenhaeghe
Source https://www.surveymonkey.com/r/XBHYFPX
Version 1.0
Creator Sergiu Siminiuc
Creator Email Sergiu Siminiuc
Publisher Sergiu Siminiuc
Publisher Email Sergiu Siminiuc
Metadata Type
  • Text
  • Table
Language English, Spanish, Danish, Greek, Italian, Dutch, Czech, Arabic, Turkish
Bibliographic Citation
Reference
Species Human
Phase