Distal spinal muscular atrophy (disorder)

NCA013 - Adult Spinal Muscular Atrophy (SMA) Collection

Year Started: 2020

This collection of cerebrospinal fluid, serum, plasma and whole blood samples from people with Spinal Muscular Atrophy (SMA) includes baseline samples prior to treatment and follow-up samples collected after commencement of medications such as nusinersen. SMA is a devastating neurological disease. Patients suffer from progressive wasting and weakness with a significant effect on quality of life, as well as an increase morbidity and mortality. Whilst genetic underpinnings of this disease is not yet determined. This collection aims to promote biomedical research by providing biomaterial to academic and commercial researchers/partners to facilitate high-quality research of why SMA occurs. These samples could be used to deepen our understanding of the cause of SMA, help understand why some patients are affected by the condition more than others and find biomarkers of early treatment response. The biological samples collected will enable a number of different analyses to be performed. This may include (but not limited to): • Biomarker studies • Immunological studies • Multi-morbidity studies • Functional analysis of cells



Access:
Open to applicants
Type:
Disease specific
Status:
In progress
Consent restrictions:
Other animal work restriction, Xenograft restriction


Associated Data Type Procurement Timeframe
Clinical records 0 - 3 months
Followup records 0 - 3 months
Freezer temperature logs 0 - 3 months
Imaging data 0 - 3 months
Pathology records 0 - 3 months
Primary care records 0 - 3 months
Survey data 0 - 3 months
Treatment records 0 - 3 months
Warm ischemic time 0 - 3 months
Donor Ethnicity 0 - 3 months


Male

Young adult (18 - 40 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
Whole blood -60°C to -85°C Not applicable 100%
Serum -60°C to -85°C Not applicable 100%
Plasma -60°C to -85°C Not applicable 100%
Cerebrospinal fluid -60°C to -85°C Not applicable 75% -99%


Female

Young adult (18 - 40 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
Whole blood -60°C to -85°C Not applicable 100%
Serum -60°C to -85°C Not applicable 100%
Plasma -60°C to -85°C Not applicable 100%
Cerebrospinal fluid -60°C to -85°C Not applicable 75% -99%

COVID-19

NCA009 Covid-19 Collection

Year Started: 2020

The Covid-19 collection consists of blood, serum, saliva, sputum, nasal strips, nasopharyngeal & oropharyngeal swabs and pleural fluid from patients infected with the novel coronavirus. In some cases, longitudinal samples have and will be collected, which could include samples prior to or after infections with Covid-19. The Covid-19 collection aims to promote biomedical research by providing biomaterial to academic and commercial researchers/partners to facilitate high-quality research to answer a range of questions including: • How does Covid-19 make some people severely unwell? • Does our immune system protect us from re-infection with COVID-19 after we have recovered from infection? • How well do tests for Covid-19 work? • What are the best ways to identify or test for Covid-19? • How does the body respond throughout the course of infection, recovery and possible reinfection? • How long does our immune system protects us from re-infection with Covid-19 after we have recovered from infection? • How does the immune system contribute to long-term post viral symptoms? The biological samples collected will enable a number of different analyses to be performed. This may include (but is not limited to): • The effects of long Covid-19 • Biomarker studies • Immunological studies • Multi-morbidity studies • Functional analysis of cells of the respiratory system



Access:
Open to applicants
Type:
Disease specific
Status:
In progress
Consent restrictions:
Other animal work restriction, Xenograft restriction


Associated Data Type Procurement Timeframe
Clinical records 0 - 3 months
Followup records 0 - 3 months
Freezer temperature logs 0 - 3 months
Imaging data 0 - 3 months
Pathology records 0 - 3 months
Primary care records 0 - 3 months
Survey data 0 - 3 months
Treatment records 0 - 3 months
Warm ischemic time 0 - 3 months
Donor Ethnicity 0 - 3 months


Female

Young adult (18 - 40 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
Whole blood -60°C to -85°C Not applicable 100%
Serum -60°C to -85°C Not applicable 100%
Plasma -60°C to -85°C Not applicable 100%
Swab -60°C to -85°C Not applicable 100%
Saliva -60°C to -85°C Not applicable 75% -99%
Pleural fluid PFL -60°C to -85°C Not applicable 75% -99%
Cerebrospinal fluid -60°C to -85°C Not applicable 11 - 25%
Sputum -60°C to -85°C Not applicable 75% -99%


Male

Young adult (18 - 40 years)

11 - 100 donors

Material Type Extraction Procedure Storage Temperature Preservation Type Macroscopic Assessment % of Sample Set
Whole blood -60°C to -85°C Not applicable 100%
Serum -60°C to -85°C Not applicable 100%
Plasma -60°C to -85°C Not applicable 100%
Swab -60°C to -85°C Not applicable 100%
Saliva -60°C to -85°C Not applicable 75% -99%
Pleural fluid PFL -60°C to -85°C Not applicable 75% -99%
Sputum -60°C to -85°C Not applicable 75% -99%
Cerebrospinal fluid -60°C to -85°C Not applicable 11 - 25%