Children's Renal (kidney) Research

ECUSTEC

Who is it for? Children and young people aged 6 months to under 19 years old with a diagnosis of suspected STEC HUS

HUS is a. Micro-angiopathic haemolytic anaemia (indicated by fragmented red cells on blood film OR plasma lactate

dehydrogenase (LDH) above local centre reference range)

AND b. Thrombocytopenia (platelets <150x109/l)

AND c. Acute Kidney Injury (AKI): “injury” or “failure” category of pRIFLE criteria despite correction of hypovolaemia

Why? To assess whether Eculizumab (Ecu) reduces the severity of Shiga-toxin producing Escherichia coli Haemolytic Uraemic syndrome (STEC HUS) in children and young people. 

To find out more: contact Renal Doctors Dr Angela Hall or Dr Sudarsana De 

or take a look at the ECUSTEC website

RaDaR

Who is it for? RaDaR is a Renal Association initiative designed to pull together information from children and adults with certain rare kidney diseases. 

Why? This will give a much better understanding of how these illnesses affect people. It will also speed up research.

To find out more: contact  Dr Angela Hall or Research Nurse Jackie Philps  

or go to the RaDaR website

National Study of Nephrotic Syndrome - (NephroS)

Who is it for? Children with Nephrotic Syndrome.
N.B. Adults are also being recruiting at this hospital by the adult Renal Research Team.

Why? Your child’s kidney specialist has made a diagnosis of Nephrotic Syndrome (NS). This can be described as either:

• Steroid Sensitive Nephrotic Syndrome (SSNS)
  
• Steroid Resistant Nephrotic Syndrome (SRNS)
  
• Focal Segmental GlomeruloSclerosis (FSGS)    

SSNS is usually a milder disease and most cases respond to steroids, but occasionally it becomes resistant to steroids and is then termed SRNS. The cause of this is rarely known and SRNS/FSGS can be very difficult to treat.  The treatment itself can have side effects and appears to be more effective in some than in others.

For this reason we want to find out:

• If some patients are likely to develop the disease because of gene mutations. Our genes sit in all the cells of the body and hold the information to develop and maintain the cells. If the programming of the gene is slightly altered this results in a ‘gene mutation’ which can result in a disease. We know that there are some gene mutations which cause NS but we don’t know how often this occurs in the UK.
  
• How the disease actually affects the kidney.
  
• Whether NS causes a pattern of changes in the kidney cells which is the same in every patient.   

To find out more: contact your Renal Doctor Dr Angela Hall or Dr Sudarsana De, or Research Nurse Jackie Philps 

Or take a look at the NEPHROS website  

There may be other renal studies, which we haven’t listed here.

Please ask your Doctor about research that may be suitable for you or your child.

It’s OK to Ask.