Research across Rare Disease Cohorts often require and use similar resources despite occurring across a vast range of diseases. In order to create cohesion across rare disease research taking place at NIHR BRC at GOSH, we have created a platform for exemplar resources to be accessed and then used in your rare disease research.
The Rare Disease Cohort Cross Cutting Theme has created a range of Standard Operating Procedures (SOPs) used across the research and translational processes. These can be used as guide when starting new research or when updating current studies to be in line with recommendations from the international rare disease research community.
Currently we have informed consent, both information sheets and consent forms for a variety of age groups in both disease groups and healthy controls. They include all recommended sections for informed consent so some sections may not be applicable to your research. Some sections require further information specific to your research to be added. It is important that informed consent is broad with the emphasis on ongoing updates to allow for flexible research, in which new technologies, platforms and work will not be hindered by outdated consent.
We are in the process of developing further resources such as laboratory SOPs. Please don’t hesitate to request similar materials and we will do our best to see if a solution exists.
Do I have to use the informed consent forms?
No, these informed consent forms and information sheets are created to act as examples to help drive progress for rare disease research at GOSH ICH. They can be used as a guide or reference tool. Alternately they can be used as base to which you can build your specific research information too.
If I use the informed consent forms do I have to go through ethics?
Yes, as an exemplar these forms do not have study specific information on them so you need to edit them as appropriate and go through the standards ethics approval system.
Have these informed consent forms been seen by patients and public already.
No, as these resources are extremely generic we have not yet asked for input from patients and the general public. Best practice in research is that patient and the public should be involved in the development of these study specific forms. At GOSH we have Deidre Leyden is the PPIE lead who can help you meet patient, young people and parents in order to get their input on your research.
For further information and support from GOSH BRC you can contact:
Emily Robinson, firstname.lastname@example.org
Dauda Bappa, email@example.com
ICH/GOSH Joint Research Office firstname.lastname@example.org
GOSH BRC PPI Research Lead Deidre Leyden email@example.com
If there are any resources you think would benefit the rare disease research at GOSH BRC please get in touch to discuss.
Standard operating procedure to describe the collection, processing and storage of venous blood for plasma for research in rare diseases research as part of the NIHR GOSH BRC.
Standard operating procedure to describe the collection, processing and storage of urine for research in rare diseases research as part of the NIHR GOSH BRC. Urine is able to be collected non- invasively and is easily accessible, making it a good candidate for a bio sample in which you can measure potential biomarkers including metabolites, cells, proteins and nucleic acids. Please note this protocol is optimized for NMR analysis of urine metabolomics.
Processing of urine SOP (27.88 KB)