(C) Photographs and webcast are the property of the International Hyperhidrosis Society. All rights reserved. Use by any individual or entity strictly forbidden and will be prosecuted. Special thanks to Ron Adelberg and Level A Productions for providing spectacular and compassionate photo-documentation of the Patient-Focused Drug Development on Hyperhidrosis landmark event.
Patient-Focused Drug Development on Hyperhidrosis: Urgent Call for Public Comments
The International Hyperhidrosis Society thanks everyone who participated in our live meeting for Patient-Focused Drug Development (PFDD) on Hyperhidrosis (Hh). On this page, you can now watch a full recording of this landmark event and view slides showing how we created a collaborative hyperhidrosis art installation. BUT, WE STILL NEED YOUR HELP. PLEASE TAKE PART IN PUBLIC COMMENTING. LEARN MORE BELOW. The PFDD process is NOT over.
The live meeting and webcast may have passed, but making hyperhidrosis patients' needs heard continues! You can be -- and need to be -- part of the PFDD Comments. PFDD Comments offer invaluable insights and critical points-of-view for an actionable future. Please send your comments to PFDD Comments with the subject "PFDD Comments" to contribute your perspective and make your mark on Hh's future.
Open Comment period continues until Jan. 13, 2018. Stakeholders from patient groups, industry, and regulatory organizations are welcome to make PFDD Comments, as well. This is a unique opportunity for those who care about and live with Hh to raise their voices -- loud and clear.
Elaborate on what you heard at the meeting, add your hyperhidrosis story, and to be very specific about the types of treatments you need. Of course, we all want a cure. But, in the meantime, what treatment endpoints would improve your quality-of-life and ability to live life to the fullest? What are your experiences with current treatment options? For more discussion talking points, scroll down.
Remember, this landmark PFDD process is designed to:
- Provide an important opportunity for those affected by Hh to share insights and perspectives with key decision-makers.
- Promote greater understanding of Hh among regulators, innovators, and industry for goal-oriented future research and treatment development.
- Advocate for a better future in Hh care and management.
If you weren't able to attend, we encourage you to watch the recording and then comment.
As those of you who participated in-person or via webcast know, our time to discuss experiences with current treatment options was limited. This is, therefore, a critical topic to discuss via the public comments.
Possible discussion points for open comments:
TREATMENTS and RESEARCH (Patient perspectives on current approaches to treating Hh, including journey to diagnosis and desired options for therapy.)
1. Treatments currently used or tried in the past.
2. Effectiveness of treatments and bothersome effects.
3. Details of current regimens including of complexity and time consumption.
4. Downsides to current treatments and unmet treatment needs.
5. Experiences with participation in clinical research.
6. Goals and expectations for treatment recognizing we all want a "cure."
7. Key considerations when choosing a treatment and most meaningful endpoints. (What % of sweat reduction would be meaningful to you?)
8. Financial experiences including out-of-pocket expenses, insurance coverage/ reimbursement, co-pays, and travel for treatment.
SYMPTOMS and IMPACTS (Disease symptoms and daily impacts that matter most.)
1. Overall impact of Hh on life.
2. Activities/choices affected by hyperhidrosis.
3. Limitations in daily life (focus, concentration, work, school, hobbies) and in relationships.
4. Embarrassment or social stigma/discrimination due to Hh.
5. Pediatric perspective including impacts on daily life/school, social ramifications, emotions, and development.
6. Healthcare journey: interactions with providers, access to care, & diagnosis.
A post-meeting report and additional materials to be released third quarter 2018.