NIHR Musculoskeletal RD TRC – Rare UK Diseases Study(RUDY): v1.1
Summary
This document will cover the benefits and responsibilities of joining the Rudy study.
What is the Rudy Study (www.rudystudy.org)
The aim of Rudy is to improve understanding of rare diseases.
Rudy is an NIHR RD TRC / Oxford NIHR Musculoskeletal BRU funded national network with a hub in Oxford to deliver this aim through the Rudy study, a national patient-centered prospective cohort for those with rare disorders from birth to late adulthood.
The disorders currently include inherited or acquired, skeletal dysplasia / metabolic bone diseases, vasculitides, arthritides and connective tissue diseases as well including rare reactions to therapies.
A key feature of Rudy is a web-based recruitment and assessment database for eligible participants that permit collection baseline generic phenotyping data including diagnosis, demographics, quality of life, pain, sleep, fatigue, activities of daily living, anxiety and depression, and in some fracture and medication. Consent also permits access to participants’ NHS and social care records as well as re-contacting participants for new clinical studies/ trials they could be eligible for. For more information visit the website and click on more information orange button or the blue Researchers button on the top right.
Why should I join Rudy?
The main benefit of joining Rudy is the opportunity to use Rudy to support research using the patients recruited in Rudy and the outputs of Rudy:
In adults: the EQ5D-5L, SF-36, Nottingham ADL score, Pittsburgh Sleep Quality Index, McGill pain, and PainDetect questionnaires, Hospital Anxiety and Depression scale, Functional Assessment of Chronic Illness Therapy- Fatigue (FACIT-F) every 6 months
In children: the PedsQL4.0, CHAQ, PedQL, CHU9D rheumatology module and the Wong-Baker Faces questionnaires every 6 months.
Importantly, you would joining a national network of clinicians, academics and patient groups and the potential to inform patient assessment template / national clinical guidelines. In addition patients under your care may have already joined.
To access the anonymised data, potential investigators are requied to submit the Rudy Analysis Form (in the researcher page) to
What do I have to do if I join?
There is relatively little burden on clinicians. If your patient has a rare disorder, point them to the rudystudy.org website for more informations. We may also contact you to confirm their diagonosis by returning a recent clinic letter to an nhs.net email under exsiting ethics. You will receive regular emails updating the progress of Rudy and the MSK GecCIP.
How do I join or get more information?
To join the network, please contact or email me at . Podcasts are on the way!
Yours sincerely
Dr M Kassim Javaid
Associate Professor in Metabolic Bone Disease, NDORMS,University of Oxford