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Myasthenia Gravis - Utilising Cross Platform Quantitative Content Analysis to uncover and validate the unmet needs of Myasthenia patients

Organizational Data

DRKS-ID:
DRKS00028999
Recruitment Status:
Recruiting complete, study complete
Date of registration in DRKS:
2023-02-06
Last update in DRKS:
2023-06-21
Registration type:
Prospective

Acronym/abbreviation of the study

MG – CroPlat

URL of the study

https://neurocure.de/klinisches-zentrum/forschung-am-ncrc/mg-croplat.html

Brief summary in lay language

Myasthenia gravis (MG) is an antibody-mediated chronic disease affecting the neuromuscular junction causing severe fluctuating muscle weakness. Whether diagnosed, undiagnosed or the support network of a loved one impacted by the disease, the rarity of Myasthenia Gravis presents those affected by the disease it with a unique set of difficulties. Among the most important of these difficulties is a lack of access to expert diagnosis and treatment from experienced neurologists. This lack of access to appropriate care leaves many to repeatedly explain their condition to their physicians who will have had little experience with or knowledge of the disease. With this in mind, the aim of this study is to improve the understanding of the needs of people affected by Myasthenia Gravis by categorizing the questions users of Myasthenia Gravis Facebook forums are asking fellow users. In doing so, the research team hopes to find out what is important to members of Myasthenia Gravis online health communities and further develop resources to match these needs.

Brief summary in scientific language

The main objective of this study is to categorise questions that users of Facebook groups on Myasthenia Gravis ask other users. The results may provide insights into the unmet needs of MG patients and their families. In doing so, the results can highlight any gaps in service provision and enable future myasthenia patient care and counselling services to be more closely aligned with patient needs. For this purpose, the frequencies of question categories and subcategories are examined as a surrogate for unmet needs. Translated with www.DeepL.com/Translator (free version)

Health condition or problem studied

ICD10:
G70.0 - Myasthenia gravis
Healthy volunteers:
No Entry

Interventions, Observational Groups

Arm 1:
Posts by patients with myasthenia gravis in Facebook groups are analysed for content category.

Endpoints

Primary outcome:
The main objective of this study is to categorise questions that users of Facebook groups ask other users about MG. For this purpose, the frequencies of question categories and subcategories are examined as a surrogate for unmet needs.
Secondary outcome:
The secondary aim of this study is to compare and link the frequency of question categories with other parameters (such as author category, see below) posted in different Facebook groups in order to validate the relevance and authenticity of queries in relation to the broader MG population. For this, the queries posted in multiple Facebook groups will be examined for: - Author categories [diagnosed MG; previously undiagnosed/confirmed MG; unknown; patient's friend/family; professional (including physicians)] - User categories (users with one-time contributions, users with more frequent contributions and so-called "superusers"). - Gender.

Study Design

Purpose:
Other
Retrospective/prospective:
No Entry
Study type:
Non-interventional
Longitudinal/cross-sectional:
No Entry
Study type non-interventional:
No Entry

Recruitment

Recruitment Status:
Recruiting complete, study complete
Reason if recruiting stopped or withdrawn:
No Entry

Recruitment Locations

Recruitment countries:
  • Germany
Number of study centers:
Monocenter study
Recruitment location(s):
  • University medical center Integriertes Myasthenie Zentrum der Klinik für Neurologie mit experimenteller Neurologie der Charité – Universitätsmedizin Berlin Berlin

Recruitment period and number of participants

Planned study start date:
2023-03-01
Actual study start date:
2023-03-23
Planned study completion date:
2023-05-24
Actual Study Completion Date:
2023-05-24
Target Sample Size:
3000
Final Sample Size:
799

Inclusion Criteria

Sex:
All
Minimum Age:
18 Years
Maximum Age:
no maximum age
Additional Inclusion Criteria:
age ≥ 18

Exclusion Criteria

none

Addresses

Primary Sponsor

Charité Campus Charité Mitte
Charitéplatz 1
10117 Berlin
Germany
Telephone:
No Entry
Fax:
No Entry
Contact per E-Mail
URL:
http://www.charite.de
Investigator Sponsored/Initiated Trial (IST/IIT):
Yes

Contact for Scientific Queries

Charité Universitätsmedizin Berlin
Dr. med. Sophie Lehnerer
Charitéplatz 1
10117 Berlin
Germany
Telephone:
+4930450539734
Fax:
+4930450539761
Contact per E-Mail
URL:
No Entry

Contact for Public Queries

Charité Universitätsmedizin Berlin
Dr. med. Sophie Lehnerer
Charitéplatz 1
10117 Berlin
Germany
Telephone:
+4930450539734
Fax:
No Entry
Contact per E-Mail
URL:
No Entry

Principal Investigator

Charité Universitätsmedizin Berlin
Dr. med. Sophie Lehnerer
Charitéplatz 1
10117 Berlin
Germany
Telephone:
+4930450539734
Fax:
+4930450539761
Contact per E-Mail
URL:
No Entry

Sources of Monetary or Material Support

Commercial (pharmaceutical industry, medical engineering industry, etc.)

Alexion Pharma
80687 München
Germany
Telephone:
No Entry
Fax:
No Entry
Contact per E-Mail
URL:
No Entry

Commercial (pharmaceutical industry, medical engineering industry, etc.)

argenx Germany GmbH
81829 München
Germany
Telephone:
No Entry
Fax:
No Entry
Contact per E-Mail
URL:
No Entry

Ethics Committee

Address Ethics Committee

Ethikkommission der Charité – Universitätsmedizin Berlin
Charitéplatz 1
10117 Berlin
Germany
Telephone:
(+49)30-450517222
Fax:
(+49)30-450517952
Contact per E-Mail
URL:
No Entry

Vote of leading Ethics Committee

Date of ethics committee application:
2022-04-26
Ethics committee number:
EA2/106/22
Vote of the Ethics Committee:
Approved
Date of the vote:
2023-01-20

Further identification numbers

Other primary registry ID:
No Entry
EudraCT Number:
No Entry
UTN (Universal Trial Number):
No Entry
EUDAMED Number:
No Entry

IPD - Individual Participant Data

Do you plan to make participant-related data (IPD) available to other researchers in an anonymized form?:
No
IPD Sharing Plan:
No Entry

Study protocol and other study documents

Study protocols:
No Entry
Study abstract:
No Entry
Other study documents:
No Entry
Background literature:
No Entry
Related DRKS studies:
No Entry

Publication of study results

Planned publication:
No Entry
Publikationen/Studienergebnisse:
No Entry
Date of first publication of study results:
No Entry
DRKS entry published for the first time with results:
No Entry

Basic reporting

Basic Reporting / Results tables:
No Entry
Brief summary of results:
No Entry