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.
A new Pernicious Anaemia research publication:
Watch this short video update from Alfie in which he summarises what we found, why it matters, and how the repository will support future studies aimed at improving diagnosis, treatment, and quality of life for everyone with PA:
Alfie updated members on his current projects in our annual seminars, a recording of which can purchased here in our shop, and he 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 keeps PAS members updated in our newsletters.
Understanding the lived experience of people with Pernicious Anaemia is essential for improving both clinical practice and patient‑centred care. Research that explores symptom burden, daily functioning, and the broader impact on wellbeing helps illuminate the often‑under‑recognised challenges patients face throughout their diagnostic and treatment journey. By deepening insight into how current treatment regimens—particularly the frequency of injections—affect quality of life, such work supports the development of more flexible, responsive, and personalised care pathways. Ultimately, studies like this play a crucial role in shaping services that better align with patient needs, preferences, and long‑term outcomes.
Find out more
Published Research
Pernicious Anaemia and B12 Deficiency
Contribute to PA Research by Making a Donation
Articles about Research
Vitamin B12 levels in children
A recent publication in the British Medical Journal posed the question “Do high vitamin B12 levels in children matter?
Whilst this paper is not available to the general public our valued colleagues in CluB-12 spotted the important points missed in this paper and filed a rapid response.
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.
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 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?