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PhD Studentship (3 years): Quality of life in patients with Niemann-Pick Disease and their carers

School of Psychology

Location:  Aston University Main Campus
Basis:  Full Time
Closing Date:  23.59 hours BST on Wednesday 21 July 2021
Reference:  R210181
Release Date:  Thursday 27 May 2021

Department: College of Health and Life Sciences

Contract Type: Fixed Term

Basis: Full Time

Closing Date: 21st July 2021

Supervisor: Dr Rebecca Knibb 

Associate Supervisor: Dr Gemma Mansell

Project Reference: Knibb_50:50_Niemann-Pick

Applications are invited for a three year Postgraduate studentship, supported by the College of Health and Life Sciences, to be undertaken within the Applied Health Research Group at Aston University.  The successful applicant will join an established research group working on quality of life in patients with long-term conditions and their families. The studentship is offered in collaboration with Niemann-Pick UK and the International Niemann-Pick Disease Registry.


The position is available to start in either October 2021 or April 2022.


Financial Support


This studentship includes a fee bursary to cover the Home fees rate, plus a maintenance allowance of at least £15,609 (subject to eligibility).


Background to the Project


The aim of this PhD is to further validate psychometric measures of QoL for children, adolescents, and adults with Niemann-Pick and to further explore the impact of Niemann-Pick Diseases on patients and carers globally.  Niemann-Pick Diseases are a group of non-curable rare genetic diseases.   Although Niemann-Pick Diseases can have a profound impact on the quality of life (QoL) of patients and their families, very little work has been conducted in this area.  A range of QoL scales for Niemann-Pick have been developed by the research team at Aston University and they now need further validation with larger sample sizes across different countries.  They also need testing longitudinally to assess sensitivity to change over time or change in relation to medication use or other clinical intervention.  Clinicians have expressed a need for short forms of the scales for rapid use in clinical settings.  This work is vital to provide the patients and families with a voice to express how Niemann-Pick is affecting them.  The QoL scales will provide clinicians with a measure that can be used to direct clinical care and they can be used to assess the outcome of treatment or clinical trials. 


The opportunity to do this work has arisen due to the development of the International Niemann-Pick Disease Registry (INPDR). The mission of the registry is to document the Niemann-Pick patient experience to advance research and improve health outcomes. This is achieved through the regular collection of data from treating clinicians and medical records through a clinician reported database (CRD) and directly from patients/carers through a patient reported database (PRD). This data will be linked and shared with researchers and clinicians in academia, industry and patient advocacy organisations, to support the improvement of care of patients with Niemann-Pick Diseases.  To ensure that the registry can provide data to support research and health outcomes for patients, it needs to have robustly designed instruments for collection of valid and reliable patient reported data. This PhD studentship will contribute significantly toward this work. 


Specific objectives of this PhD are to (1) further validate the Niemann-Pick QoL scales for children, adolescents, and adults; (2) develop and validate short-forms of the Niemann-Pick QoL scales for clinical use; (3) explore the impact of Niemann-Pick on the QoL of patients and carers cross-sectionally; (4) explore the impact of Niemann-Pick on QoL of patients and carers longitudinally.


Person Specification


The successful applicant should have been awarded, or expect to achieve, a Masters degree in a relevant subject with a 60% or higher weighted average, and/or a First or Upper Second Class Honours degree (or an equivalent qualification from an overseas institution) in Psychology, Health Psychology, Applied Psychology or similar. Preferred skill requirements include knowledge/experience of advanced quantitative and qualitative research methods and analysis, including development and use of psychometric scales and patient reported outcome measures, survey design, conducting interviews, analysis of cross-sectional and longitudinal survey data, thematic analysis of interview data, knowledge of the impact of long-term or life-limiting conditions on patients and their families.  


Contact information


For formal enquiries about this project contact Dr Rebecca Knibb by email at  


Submitting an application


As part of the application, you will need to supply:

  • A copy of your current CV
  • Copies of your academic qualifications for your Bachelor degree, and Masters degree (if studied); this should include both certificates and transcripts, and must be translated in to English.
  • A research proposal statement*
  • Two academic references
  • Proof of your English Language proficiency


Details of how to submit your application, and the necessary supporting documents can be found here.  

Please select “Research Health Sciences (Including Optometry, Pharmacy & psychology Research Areas) (Full time)” from the application form options.


*The application must be accompanied by a “research proposal” statement. An original proposal is not required as the initial scope of the project has been defined, candidates should take this opportunity to detail how their knowledge and experience will benefit the project and should also be accompanied by a brief review of relevant research literature.


Please include the supervisor name, project title and project reference in your Personal Statement.


If you require further information about the application process please contact the Postgraduate Admissions team at 

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Further particulars and application forms are available in alternative formats on request i.e. large print, Braille, tape or CD Rom.

If you have any questions, please do not hesitate to contact HR via



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