Pernicious Anaemia Research
Current Research Collaborations
University of Surrey
We have entered into a Studentship agreement where by we are supporting a full time PhD student Alfie Thain. This full time collaboration under the supervision of Dr Kourosh Ahmadi and Dr Kath Hart focuses on “New Precision Medicine Approaches for the Treatment of Pernicious Anaemia – A neglected autoimmune disease of Vitamin B12 Deficiency”. The James Lind Alliance Priority Setting Partnership priorities underlie the key area of research being undertaken by Alfie and the team at Surrey and our members have or are in the process of taking part in various connected surveys.
Alfie recently updated members on his current projects in our annual seminar, a recording of which can purchased here in our shop.
Alfie is an author of a paper “Patient Reported Characteristics of Pernicious Anaemia, a First Step to Initiate James Lind Alliance Priority Setting Partnership Driven Research” which is currently under peer review and awaiting publication.
Alfie is a previous guest blogger for the Pernicious Anaemia Society.
Quadram Institute
We have entered into a Studentship agreement whereby we are supporting a PhD student part time over 6 years. This collaboration, under the supervision of Martin Warren and experts in the field of vitamin B12, is working on a postgraduate studentship project entitled “Developing insights into vitamin B12 treatment and outcome“. As a number of the priority questions in the James Lind Alliance Priority Setting Partnership focus on better understanding why some people need different levels and frequency of treatment, this research is extremely valuable to the Pernicious Anaemia Society and its members. This studentship agreement ends in 2028.
Rachel Barnes, the PhD student has recently updated PAS members in our December newsletter.
Published Research
Pernicious Anaemia and B12 Deficiency
Contribute to PA Research by Making a Donation
Articles about Research
Low vitamin B12 associated with restless leg syndrome
In restless legs syndrome, (sometimes written as RLS), people get a feeling like their legs are crawling with ants, tingling, burning, itching or cramping. These feelings get worse when the legs have been motionless for a while, especially at night and improve on movement. This leads to sleep disturbance, and results in further problems such as fatigue, mental health problems and high blood pressure. Therefore, it is important to find all possible causes of restless legs.
Research priorities for B12 patients
In conjunction with the Pernicious Anaemia Society, The James Lind Alliance conducted a priority setting process for research into the autoimmune condition called Pernicious Anaemia (PA).
The results are in! We have the Top 10 Research Priorities for Pernicious Anaemia!
Following the Pernicious Anaemia James Lind Alliance Priority Setting Partnership (PSP) workshops, we now have our Top...
The James Lind Alliance Priority Setting Partnership on Pernicious Anaemia
Despite ongoing research, there are still many questions about the diagnosis and treatment of Pernicious Anaemia that remain unanswered.
It is important for research funders to understand what is important to patients, carers and health professionals so they can focus their research on areas that will make the biggest difference.
The Pernicious Anaemia James Lind Alliance Priority Setting Partnership (PSP) also helps to increase awareness of why research into Pernicious Anaemia is necessary and important.
Read the full report of the PSP here.
NICE guideline [NG239]
Vitamin B12 deficiency in over 16s: diagnosis and management
Research Recommendations
- Vitamin B12 replacement
What is the clinical and cost effectiveness of vitamin B12 replacement for vitamin B12 deficiency, including the dose, frequency and route of administration? - Diagnosing vitamin B12 deficiency
What are the long-term outcomes for people with suspected vitamin B12 deficiency when comparing testing of total B12 (serum cobalamin), active B12 (serum holotranscobalamin), serum methylmalonic acid (MMA) or plasma homocysteine? - Self-administration
What is the clinical and cost effectiveness of self-administration of vitamin B12 replacement injections for deficiency compared with administration by a healthcare professional? - Identifying the cause of vitamin B12 deficiency
What is the clinical and cost effectiveness of pepsinogen, gastrin, parietal cell antibodies and CobaSorb in identifying the cause of vitamin B12 deficiency in people with negative anti-intrinsic factor antibody test results? - Follow up
What should be included in a follow-up review for people with vitamin B12 deficiency, including people with autoimmune gastritis? - Risk factors – medicines
Which medicines increase the risk of vitamin B12 deficiency? - Risk factors – diet
Which dietary factors increase the risk of vitamin B12 deficiency? - Identifying the cause of vitamin B12 deficiency
What is the clinical and cost effectiveness of reflex anti-intrinsic factor antibody testing versus clinician-requested anti-intrinsic factor antibody testing? - Monitoring for gastric cancer
What monitoring should be offered to people with autoimmune gastritis to identify gastric cancer?