The Evidence Gap Closes One Record at a Time
No national system currently tracks delayed, cumulative mitochondrial injury following drug exposure. The DIMD Registry exists to build that record — structured, longitudinal, and open to all who have been affected.
Why a Registry — and Why Now
The pharmacovigilance gap at the center of the DIMD problem is not just theoretical. It is structural: there is no existing system designed to capture what actually happens to patients over time after drug exposure. MedWatch captures acute events. EHRs document individual encounters. Insurance claims track diagnoses. None of these systems are designed to link a drug exposure to symptoms that emerge months or years later across multiple body systems.
The result is a kind of systematic invisibility. Patients who develop FQAD or other drug-induced mitochondrial syndromes are not being ignored maliciously — they are being missed structurally, by systems that were never designed to see what happened to them.
"An adverse effect that is never recorded is an adverse effect that never happened — as far as the data is concerned."
The DIMD Registry is built to close that gap. It is designed from the ground up to capture the things current systems miss: exposure histories, symptom timelines, delayed onset patterns, functional impact, and multisystem involvement — organized in a structured format that can generate meaningful evidence over time.
The Gaps in Current Surveillance
No Longitudinal Tracking
Existing pharmacovigilance systems do not follow patients over months or years after drug exposure. Delayed effects that emerge after discharge or prescription completion are rarely captured.
No Exposure-Effect Linkage
No system routinely links a specific drug exposure to symptoms that appear weeks, months, or years later — even when the clinical pattern strongly suggests a causal relationship.
Organ-Based Fragmentation
Systems organized by specialty or diagnosis code cannot recognize multisystem patterns. The neurologist sees neuropathy; the rheumatologist sees joint involvement; no system sees both as one coherent syndrome.
No Repeat-Exposure Flagging
No EHR or prescribing system alerts a clinician that a patient has a prior adverse effect history consistent with FQAD before a new fluoroquinolone prescription is written.
No Mitochondrial Biomarker Endpoints
Standard clinical workups do not include mtDNA copy number, OXPHOS complex activity, or other mitochondrial biomarkers — so mitochondrial injury is invisible to routine surveillance even when present.
What the Registry Collects
The registry is organized around structured data domains designed to capture the information that current surveillance systems miss. Every domain serves a specific purpose in building the longitudinal evidence base for DIMD recognition.
Drug Exposure History
- Specific fluoroquinolone(s) received
- Dosage, duration, indication
- Number of courses and dates
- Concurrent medications at time of exposure
- Route of administration
Symptom Timeline
- Onset timing relative to exposure
- Symptom progression over time
- Waxing and waning patterns
- Post-exertional symptom changes
- Identification of second-hit events
Multisystem Involvement
- Neurological symptoms (peripheral, central)
- Musculoskeletal and tendon involvement
- Autonomic and cardiovascular symptoms
- Cognitive and psychiatric symptoms
- Fatigue and exertional intolerance
Functional Impact
- Work and occupational capacity changes
- Activities of daily living limitations
- Exercise and exertion tolerance
- Sleep quality and disruption
- Overall quality of life trajectory
Diagnostic Journey
- Diagnoses received and timeline
- Time to recognition of drug-exposure link
- Specialties consulted
- Mitochondrial or metabolic testing performed
- Diagnostic codes assigned (ICD-10)
Demographics & Context
- Age range and biological sex
- Pre-existing conditions at time of exposure
- Indication for fluoroquinolone use
- Geographic region (broad)
- Year(s) of exposure
How the Intake Works
The registry is designed to be accessible — not burdensome. You do not need a medical record in front of you. You do not need perfect recall of every date. Approximate timelines, partial information, and best estimates are all valuable. The structured intake is organized into sections so you can work through it at your own pace.
Begin the Structured Intake
Complete the Phase 1 DIMD Registry intake directly on this page. No identifying information is required, and email is optional.
Work Through Sections at Your Own Pace
The questionnaire is organized into collapsible sections so participants can provide approximate timelines, partial information, and best estimates without needing perfect recall or complete medical records.
Optional Follow-Up
If you choose to provide an email address, you may receive future follow-up surveys or clarification requests. This is optional and can be withdrawn at any time.
Your Data Builds the Record
De-identified, aggregated registry data may be used to support research, education, pharmacovigilance, policy advocacy, and improved recognition of delayed multisystem drug injury.
Privacy & Data Handling
- No identifying information required. The registry does not collect your name, address, date of birth, or any information that could directly identify you.
- Email is optional. Providing an email allows for optional follow-up and longitudinal participation, but is not required.
- Data is used only for DIMD research and advocacy. Registry data will not be sold, shared with pharmaceutical companies, or used for any commercial purpose.
- You can withdraw at any time. If you provided an email, you may request deletion of your contribution at any point.
- All outputs are de-identified. Any publication, report, or advocacy document derived from registry data will use aggregated, de-identified information only.
- This is a research registry, not a clinical service. Participating does not establish a patient-provider relationship and does not constitute medical advice or care.
"Every record in this registry represents a person the current system failed to see. Together, they become the evidence the system can no longer ignore."
— DIMD RegistryThe registry is most powerful when it captures the full range of experiences — from severe, life-altering presentations to milder cases that resolved partially. All of it is signal. All of it is data. The absence of severe disability does not mean your experience is less valuable to the evidence base.
Clinicians who have observed patterns in their practice can also participate — not as patients, but as professional observers. A clinician who has seen multiple FQAD presentations, who has noted diagnostic fragmentation, or who has struggled to code or communicate these effects has valuable structured information to add.
The Registry Is Open To
Patients Who Received Fluoroquinolones
Anyone who received a systemic fluoroquinolone antibiotic and experienced adverse effects — whether mild, severe, resolved, or ongoing. Any timeline, any severity level.
Family Members or Caregivers
Those who observed and supported someone affected by fluoroquinolone adverse effects — particularly where the patient is unable to participate directly.
Clinicians Who Have Observed FQAD
Healthcare providers who have seen clinical presentations consistent with FQAD in their practice and wish to share professional observations to the aggregate record.
Patients With Other Suspected DIMD
Individuals who experienced delayed, persistent, multisystem adverse effects following other medication classes associated with mitochondrial mechanisms — not limited to fluoroquinolones.
Phase 1 DIMD Registry Intake
The Phase 1 DIMD Registry is now open for fluoroquinolone-related patient-reported outcomes. You may complete the structured intake directly below. No identifying information is required. Email is optional and only needed if you want future follow-up, updates, or the ability to clarify your submission later.
Open each section, complete it at your own pace, then proceed to the next. Approximate timelines, partial information, and best estimates are all valuable — you do not need perfect recall or complete medical records.
DIMD Structured Intake Form
No identifying information is required. Email is optional. Your responses are patient-reported and will be used only in de-identified, aggregate form for research, education, and advocacy purposes.
This site is for educational and advocacy purposes only. The DIMD Registry does not provide medical advice, diagnosis, or treatment. All data is handled with strict privacy protections and used solely in de-identified, aggregate form for DIMD research, education, and advocacy. See our Privacy Policy.
Every Record Is a Voice the System Must Count
The registry does not replace clinical research — it builds the foundation that makes clinical research possible. Participate, share it, and help make the invisible visible.