We have completed the Modena Questionnaire. That number is far too low for the research team to build valid patient profiles or secure the next phase of funding.
If participation stays this low, the only realistic hope ENS patients have ever had may disappear.
Fill Out the Questionnaire Here:
đ https://redcap.unimore.it/redcap/surveys/?s=ATYLYMC3DLXFXMAL
Deadline: December 31
No diagnosis required.
No CT scan needed at this stage.
If you have the symptoms, that is enough.
CT scans can be sent later to:
đ§ ensquestionnaire@gmail.com
Why This Questionnaire Matters
Without sufficient data, ENS will remain under-recognized and underfunded. That means:
- No official recognition of ENS
- No compensation
- No legal wins for patients
- No progress toward regenerative treatment
- No hope of restoring normal breathing or achieving consistent sleep again
For many patients, this questionnaire is the only meaningful action they can take to help move science forward.
What the Modena Project Is
The Modena research initiative — part of the Italian PRIN 2022 program — is one of the most ambitious ENS studies ever funded. The goal is groundbreaking:
To create a fully autologous, bioengineered pseudo-turbinate — a living structure made from your own cells.
Researchers aim to:
- Regenerate turbinate-like cartilage using a validated graft (N-TEC)
- Cover it with functional respiratory epithelium
- Map airway stem cells using single-cell transcriptomics
- Study integration between engineered cartilage and epithelial tissue
In simple terms:
They are trying to regrow the structures that were removed.
This is revolutionary.
Here is the official project description:
đ https://www.cmr.unimore.it/progetti-in-corso/the-empty-nose-syndrome-investigations-propaedeutic-to-in-vivo-studies-progetti-di-ricerca-di-rilevante-interesse-nazionale-prin-2022/
Why ENS Patients Must Act Now
ENS is not just a mechanical disorder — it causes severe dysregulation of airflow perception, sensory loss, mucosal damage, sleep disturbance, anxiety, depression, and tragically, a high suicide rate.
Yet no curative treatment exists today. Only palliative measures.
This project represents the first real chance to change that.
But the researchers cannot advance without a sufficiently large, scientifically valid dataset of ENS patients. Participation is the only barrier right now.
If we fail to mobilize as a community, the message to funding agencies will be:
“ENS is not a significant clinical problem. Patients are not engaging.”
We cannot let that happen.
What You Can Do
- Fill out the questionnaire today
đ https://redcap.unimore.it/redcap/surveys/?s=ATYLYMC3DLXFXMAL - Share the link with every ENS group, forum, Discord, Facebook group, or WhatsApp chat you know.
- Encourage just one more person to complete it.
If everyone did that, numbers would multiply instantly.
This Is the Moment
ENS has taken so much from so many:
Sleep.
Energy.
Work.
Mental health.
The ability to simply breathe and feel normal.
For once, we have an opportunity to fight back — with science, data, and a global patient voice.
But time is running out.
Please take a few minutes today. Fill out the Modena Questionnaire before December 31.
This may be the only opportunity we ever get to push ENS research toward a real treatment.