Developing a Roadmap for Bronchiectasis Research – Lend Your Voice Now!
Earlier this year, the COPD Foundation began working with Oregon Health & Sciences University (OHSU) and NTM Info & Research on a Patient-Centered Outcomes Research Institute (PCORI)-funded project designed to identify priorities and create a roadmap for bronchiectasis research.
There are no published U.S. guidelines for bronchiectasis treatment in patients without underlying cystic fibrosis, but in 2010 the British Thoracic Society produced guidelines summarizing current therapies. These guidelines revealed a lack of safety and effectiveness data to guide treatment of bronchiectasis, and highlighted the need for research in many aspects of this disease.
These guidelines did not take a patient-centered approach and to date there has been little or no patient input into the research of this often-devastating disease. There are a number of new therapies being tested, including ciprofloxacin and other inhaled or oral antibiotics. The goals of therapy involve maintaining quality of life and minimizing disease progression and it is believed that a number of untested therapies (e.g. antibiotics, steroids, bronchodilators, hypertonic saline, others) are routinely being used.
Input is needed on which interventions are most appealing or concerning to patients and which outcome measures are most important. A research roadmap, developed in collaboration with patients, will provide essential direction for future bronchiectasis research. The roadmap for bronchiectasis research will include the following components:
- Background describing why the roadmap is needed,
- Key research questions that need to be answered, and
- Next steps to answer the research questions<
For this patient-centered roadmap development process, patient input is critical and we need your help to review and comment on research priorities, outcomes and treatment comparisons of interest via a survey.
If you are a bronchiectasis patient interested in participating in a brief, anonymous survey go to www.surveymonkey.com/r/Bronchsurvey2016 and take the survey online.
After results have been collected, the COPD Foundation will work closely with OHSU, key collaborators, a seven-member Patient Advisory Panel and clinical research stakeholders to develop and refine the roadmap document. The final report will be made available to the public at a later date on www.BronchandNTM360social.org, the online community for bronchiectasis and NTM.
Thank you lending your voice to this important work!