Lead Researcher Dr Smeeta Sinha
This collection consists of serum, whole blood and swabs from patients with kidney disease, including patients with acute kidney injury, glomerulonephritis and polycystic kidney disease. This collection also includes surplus arterial tissue collected from pre-dialysis and dialysis patients during (i) arteriovenous fistula surgery and (ii) limb amputation surgery for peripheral artery disease.

Chronic kidney disease is associated with a number of serious complications, including an increased risk of
(i) cardiovascular disease
(ii) bone forming in the blood vessel wall (vascular calcification)
(iii) a reduced red blood cell count (anaemia)
(iv) metabolic bone disease

There are limited treatment options for some of these serious complications in patients with chronic kidney disease – in particular vascular calcification.

This collection will provide a resource for researchers investigating kidney disease and/or vascular complications in kidney disease, and will help researchers understand if the levels and/or activity of specific proteins are changed in this disease. This collection of samples could also be used in improving our understanding of the pathophysiology of kidney diseases.

The biological samples collected will enable a number of different analyses to be performed. This may include (but is not limited to):

• Genetic studies
• Immunological studies
• Multi-morbidity studies
• Biomarker studies
• Functional analysis of cells – surplus tissue collection from surgery in patients with kidney disease (such as peritoneal catheter insertion, arterio-venous fistula creation, parathyroidectomy)

Lead Researcher Professor Darren Green
The acute biobank collection can support explorations of novel application of laboratory biomarkers in acute medical care. The population is acute medical presentations to secondary care. Examples of areas currently in exploration are acute cardiovascular presentations and acute kidney injury. The collection consists of whole blood, serum, plasma and citrate plasma samples and associated clinical data. The collection has scope for adjustment to the sample type collection through NCARC’s simple amendment process.

This collection aims to promote biomedical research by providing biomaterial to academic and commercial researchers/partners to facilitate high-quality research in establishing a clear diagnosis in patients presenting to hospitals. There is potential to improve the method and time taken for diagnosis with refinement of laboratory processing and biomarker discovery.

The biological samples collected will enable a number of different analyses to be performed. This may include (but is not limited to):
• Biomarker studies
• Immunological studies
• Multi-morbidity studies

Lead Researcher: Dr Adrian Heald

The diabetes and endocrine collection of serum, whole blood and swabs from patients with diabetic foot ulcerswill provide an important resource for endocrine, diabetic and testosterone replacement research in the future that has the potential to benefit patients with rare manifestations of diabetes and endocrine disorders.

At the NCA we see many patients with rare endocrine conditions such as Congenital Adrenal Hyperplasia, Conn’s Syndrome and Premature Ovarian Failure as well as people who have not responded to the usual treatment approach, such as those with treatment unresponsive hypothyroidism and severe polycystic ovarian syndrome. This collection aims to provide a genetic and serological repository that will be available for academic and commercial research teams to undertake studies so that we can better understand the aetiology and potential optimal therapeutic strategies for managing these conditions.

The biological samples collected will enable a number of different analyses to be performed. This may include (but is not limited to):

• Genetic studies
• Biomarker studies
• Functional analysis of cells

Lead Researcher: Dr Karolina Stepien

(NCARC) includes a biobank to explore novel application of laboratory biomarkers in inherited metabolic diseases. The collection population comprises patients with rare metabolic diseases such as mucopolysaccharidosis, alpha-mannosidosis, mucolipidosis, Pompe disease, Fabry disease, Gaucher disease, phenylketonuria, urea cycle disorders, organic acidaemia, mitochondrial diseases and many others. The collection consists of whole blood, serum, plasma and citrate plasma samples as well as associated clinical data from both primary and secondary care settings. The collection allows scope for adjustment to the sample type through NCARC’s simple amendment process.

This collection aims to promote biomedical research by providing biomaterial to academic and commercial researchers/partners to facilitate high-quality research in establishing prognostic markers of cardiovascular disease, bone health, renal disease and acute illness among rare diseases. There is potential to improve the method and time taken for diagnosis, prognostication and treatment monitoring with refinement of laboratory processing and biomarker discovery.

The biological samples collected will enable a number of different analyses to be performed. This may include (but is not limited to):

• Biomarker studies
• Multi-morbidity studies
• Biomedical device development

We hope that increasing the availability of biomaterial for research within the rare diseases sector will bring together leading clinicians from across Northern Care Alliance, as well as wider global health institutions, research and academic centres, commercial enterprises, charitable partners and patient advocacy groups to propose, assess and prioritise projects, ultimately improving and saving lives.

Lead Researcher Dr Tobias Langheinrich
NCARC has a growing collection of blood and cerebrospinal fluid samples in patients with idiopathic normal pressure hydrocephalus (iNPH). There is an associated research database with clinical, neuropsychological and imaging data.

iNPH lacks a good understanding of the cause of the condition. The iNPH collection aims to promote research into the discovery of new biomarkers by providing biomaterial to academic and commercial researchers/partners, to enable investigation into the underlying cause of the condition using the most advanced scientific methods thereby improving diagnosis and treatment.

Lead Researcher Professor Hector Chinoy
NCARC has the following samples and data from approximately 60 patients with Idiopathic Inflammatory Myopathies (IIM), otherwise known as myositis.
Samples:
• EDTA whole blood – frozen – for subsequent DNA and plasma extraction
• Tempus whole blood – frozen – for subsequent RNA extraction
• Extracted serum – processed and frozen – for subsequent use
• Muscle biopsy samples – For ‘fresh use’ or processed and frozen for subsequent use

Data:
• Diagnosis (including sub group – DM, PM, IBM)
• Clinical features
• Laboratory investigations
• Past and current medications
• Auto-antibody status
• Muscle biopsy details
• Manual Muscle Test
• Disease activity assessment
• Damage index
• HAQ
• Functionality index and quality of life index
• Ethnicity
• Month and year of birth
• Month and year of disease onset

This is a rare autoimmune condition that can affect the muscles and skin of sufferers and result in weakness and disability. The aim of this collection is to promote high quality biomedical research (through access to samples and data) to understand more about this particular disease and identify new ways to improve the diagnosis, treatment and care of patients with IIM.
The biological samples collected will enable a number of different analyses to be performed. This may include (but is not limited to):
• Gene expression analysis
• Biomarker discovery
• Immunological and metabolomics studies
• Multi-morbidity studies
• Functional analysis of immune cells versus cancer cells

Lead Researcher Dr Amina Chaouch
Motor neurone disease (MND) samples (blood, plasma and serum) are difficult to collect and in conjunction with clinical data that allows deep phototyping, we hope this collection can contribute to (but not limited to) robust biomarker discovery studies. MND is an uncommon condition that affects the brain and nerves. There is no cure for MND, but we do hope that this collection can promote biomedical research by providing biomaterial to academic and commercial researchers/partners to facilitate high-quality research to reduce the impact it has on a person’s daily life by improving the diagnosis and treatment of MND.
The biological samples collected will enable a number of different analyses to be performed. This may include (but is not limited to):
• Biomarker discovery
• Drug discovery
• Gene expression analysis
• Neurogenesis and proteomics studies
• Alzheimer’s & Dementia studies

Lead Researcher Dr James Lilleker
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

Lead Researcher Dr James Lilleker
This is a new collection of serum, plasma and whole blood samples, with associated clinical data, from patients with Myasthenia Gravis. We aim to collect approximately 50 samples in 2022.

The collection aims to include samples from people with myasthenia gravis who are newly diagnosed, stable on or off immunosuppression, experiencing disease exacerbation, and those refractory to standard treatment. Alongside collection of a minimum data-set including standardised outcome measures, this collection should become a valuable tool to researched looking to better understand the biochemical changes that occur in myasthenia of different sub-types, treatment-requirements and at disease activity.

The biological samples collected will enable a number of different analyses to be performed. This may include (but is not limited to):
• Biomarker studies
• Immunological studies
• Multi-morbidity studies
• Functional analysis of cells

Lead Researcher Dr Matthew Jones

The neurodegenerative dementias collection of serum, whole blood and swabs from patients with neurodegenerative diseases could be used in improving our understanding of the genetic basis of neurodegenerative diseases, for example those causing dementia.

In addition, the samples could support the development of blood biomarker technology with the aim of earlier and more accurate diagnosis of these disorders. Biomarkers may also be developed that allow tracking of disease progression with time – samples collected from the same individuals over various time intervals can support such work (longitudinal samples).

At NCA we see many patients with neurodegenerative diseases, many of them will be at relatively early stage of their illness. CFU medical and psychology staff are well-practiced in participant recruitment for research, including dementia studies, and have considerable experience in consenting participants who lack capacity. They can identify suitable individuals and assess capacity. Potentially suitable participants who lack capacity to decide on inclusion in the project can be recruited using a consultee consent form.

The biological samples collected will enable a number of different analyses to be performed. This may include (but not limited to):

• Genetic studies
• Biomarker studies
• Functional analysis of cells

Lead Researcher Professor Nawar Bakerly
The respiratory collection has approximately 500 samples with associated clinical data. The collection includes samples of whole blood taken from adults who have respiratory or respiratory related conditions, but also includes other biological samples (plasma, sputum, broncho-alveolar lavage, pleural fluid, solid tissue).

The respiratory collection aims to promote biomedical research by providing biomaterial to academic and commercial researchers/partners to facilitate high-quality research to improve the diagnosis and treatment of respiratory diseases, that is lung disease, including (but not limited to) inflammatory, obstructive and restrictive lung disorders, respiratory tract infections, pleural cavity disease, malignancies relating to the respiratory system and pulmonary vascular conditions.
The biological samples collected will enable a number of different analyses to be performed. This may include (but is not limited to):
• Gene expression analysis
• Biomarker discovery
• Immunological studies
• Multi-morbidity studies
• Functional analysis of cells of the respiratory system

Lead Researcher Dr Sean Knight
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

Lead Researcher Dr Zohaib Iqbal
The vascular disease collection contains approximately 400 samples (blood, plasma and serum) with associated clinical data from patients pre and post bariatric surgery. The collection boasts up to 5 years of follow up data post-surgery that could be valuable when studying longer term outcomes post bariatric surgery.

The vascular disease collection aims to promote biomedical research by providing biomaterial to academic and commercial researchers/partners to facilitate high-quality research to identify variables associated with vascular disease – long term occurrence of peripheral vascular disease, cardiovascular diseases, obesity.

The biological samples collected will enable a number of different analyses to be performed. This may include (but is not limited to):
• Echocardiographic markers
• Diabetes studies
• Peripheral artery disease (PAD)

Lead researcher Dr Javed Sultan
The upper gastrointestinal cancer collection consists of excess tumour tissue (oesophagogastric resection specimen), saliva, urine, plasma, blood and its associated clinical data.

This collection aims to promote biomedical research by providing biomaterial to academic and commercial researchers/partners to facilitate high-quality research to provide further knowledge about how certain tumours behave and whether they would respond to certain drugs such as chemotherapy or immunotherapy to improve treatment and demonstrate the utility of prehabilitation before surgery and guide the current treatment approaches used to improve patient care, outcomes and survival in the setting of oesophagogastric cancer success and outcomes for future patients with this condition.
The biological samples collected will enable a number of different analyses to be performed. This may include (but is not limited to):
• Biomarker studies
• Drug discovery
• Immunological studies
• Multi-morbidity studies