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Establishment of a Clinic-based Biorepository
Published on: May 29, 2017
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Towards establishing a multiple sclerosis biobank in Jordan
Mamoun Ahram1, Rand Zaza, Leena Ibayyan
11Department of Physiology and Biochemistry.
The International Journal of Neuroscience
|January 25, 2014
Summary
Most multiple sclerosis (MS) patients in Jordan are willing to participate in genetic research and biobanking. This high willingness supports establishing an MS biobank in Jordan for future genetic studies.
Area of Science:
- Genetics
- Neurology
- Biobanking
Background:
- Multiple sclerosis (MS) is a complex, multifactorial neurological disease.
- Genome-wide association studies (GWAS) are crucial for understanding MS genetic associations.
- Biobanks are essential for facilitating large-scale genetic research like GWAS.
Purpose of the Study:
- To assess the willingness of Jordanian multiple sclerosis patients to participate in long-term genetic research.
- To determine preferred consent forms for MS biobanking and GWAS initiatives in Jordan.
- To support the establishment of an MS biobank in Jordan.
Main Methods:
- Recruited 289 MS patients in Jordan for genetic studies.
- Collected personal and clinical information from enrolled participants.
- Assessed patient willingness to participate in genetic studies and their consent preferences.
Main Results:
- Approximately 96% of MS patients agreed to participate in genetic studies.
- 85% of patients preferred open consent, with 37% favoring consent renewal.
- All patients consented to recontact and information updates via medical records.
Conclusions:
- High patient willingness supports the establishment of a specialized MS biobank in Jordan.
- Findings pave the way for Jordan's participation in international large-scale genetic initiatives.
- Understanding consent preferences is key for successful biobanking and genetic research.
