Research Ideas from Patients
Because Your Input matters!
Your experiences as a patient provide valuable insights that can guide the future projects. By sharing your research ideas, you highlight the unmet needs and challenges that might be overlooked. We will showcase your suggestions here on our website, giving researchers and healthcare professionals the opportunity to focus on what truly matters to you. Together, we can drive meaningful change and improve care where it's needed most.
Project Proposals:
Patients with familial hypomagnesaemia often need to take large amounts of electrolytes, particularly magnesium. This high dosage frequently results in chronic diarrhea, a condition that many patients endure throughout their lives. Despite how common this issue is, there are currently no studies that investigate the long-term consequences of chronic diarrhea in these individuals
Project proposed by Susana Carvajal Arjona
Contact: s.carvajal[at]hipofam.org
An opportunity to learn about the life history of Alport patients, patient reported outcomes and the impact of transition from Paediatric to adult care along with epidemiological, diagnostic and therapeutic research. There are over 2000 Alport Patients within ERKNet and RADAR UK (UK rare renal disease registry), an opportunity for a joint funded project with the Stoneygate Alport Research Hub at Manchester University
Project proposed by Heidi Zealey
Contact: heidizealey@alportuk.org