By ADSHGAssessing the potential for fine-tuning the management of Addison's disease/steroid replacement therapy - by Sarah J.K. Baker
The 2007 study by Sarah J.K. Baker was an early survey of ADSHG members' experiences (n=150). It addressed the potential for fine-tuning the management of Addison's disease/steroid replacement therapy, drawn from the experience of ADSHG members.
To assess the nature and degree of post-diagnosis symptoms. If significant patterns should emerge, to have these symptoms acknowledged and validated by medical professionals, raising awareness of them amongst both specialists and GP's. To prompt a clinical study of why these symptoms occur and to request a set of comprehensive guidelines on what, if any, preventive or ameliorative measures can be practicably taken.
There is considerable evidence from the data collected that certain post-diagnosis symptoms exist amongst patients with Addison's disease and in some cases are widespread. The question arises as to cause and effect and the degree to which this can be established in relation to each. If any links can be clinically established, are they due to inaccurate baselines, less than optimal dosage times, the disease per se or the treatment per se? In any case there seems to be a clear opportunity to fine-tune hydrocortisone levels through greater use of day curve analyses. There also seems to be considerable potential to bridge a gap perpetrated on both sides between patient and doctor via exchange of more rather than less information. Additionally, more professional advice on diet, nutrition and lifestyle may do much to improve the effectiveness of self-help strategies and reduce the trial and error basis on which these tend to be adopted.
By ADSHGThe ADSHG is able to make small grant funding to a limited number of researchers each year, for projects that will advance good clinical practice in the diagnosis and management of Addison's disease.
The trustees would ordinarily prefer to offer the award to researchers working on projects at a recognised higher education research institute and/or medical institute within the UK, where the results can be shown to be of direct relevance to clinical practice affecting our members. The ADSHG medical research grant is open to applications from researchers based outside the UK, where their findings may be relevant to clinical practice affecting our members.
The amount is limited to £5,000 per grant, which is intended to assist medical researchers with the costs of equipment, laboratory charges or other running costs.
You can find out more information about our medical grant scheme on our website.
By ADSHGThe ADSHG receives regular approaches from researchers who are seeking our assistance with recruiting participants for their scientific projects. These approaches range from requests to publicise online questionnaires, through assistance in sourcing participants for qualitative interviews or focus groups, to requests to assist with long-term clinical trials.
To apply for ADSHG assistance in a research project, we ask researchers to download and complete this questionnaire and return it to us, along with supporting documentation, for consideration by the ADSHG trustees and wider executive committee. You can find out more information on how the ADSHG can assist with recruiting participants for scientific projects on our website.