Procedural studies
The anchor question: who will do the physiologic study the care map calls for, with the measurement the anchor physician asked for, read by someone who knows the question, at a price the patient saw in advance? Every care map so far leans on this roster: connective tissue for echo and autonomic testing, neurogenetic for nerve conduction and PFTs, nonspecific symptoms for tilt table and skin biopsy.
Status: Forming. Page and channel are up; the roster needs a lead. Entries are proposed and vouched in the channel.
What the patient cohorts need
| Study | Serves | The detail that is usually missed |
|---|---|---|
| Echocardiography with aortic root measurement, Z-score and global longitudinal strain | Connective tissue, transthyretin amyloidosis, comprehensive genetic risk | The root must be measured and indexed to body surface area; strain must be reported, not just acquired. Ask for both in writing. |
| Autonomic testing: tilt table, Valsalva, heart rate variability, QSART or equivalent | Connective tissue, nonspecific symptoms, neurogenetic | A proper tilt: ten minutes upright, heart rate criteria applied. Many "tilt tables" are cardiology syncope protocols that answer a different question. |
| EMG and nerve conduction studies | Neurogenetic, transthyretin amyloidosis, nonspecific symptoms | A reader who looks for a length-dependent pattern and comments on it. Large-fiber studies are normal in small-fiber neuropathy, and the report should say so. |
| Skin biopsy for intraepidermal nerve fiber density | Nonspecific symptoms, connective tissue | Few practices do the punch and fewer labs process it; the roster needs both halves. |
| Cardiopulmonary exercise testing | Nonspecific symptoms, neurogenetic (mitochondrial) | Gas exchange, lactate where mitochondrial disease is in question, and an interpreter who reads past cardiac ischemia. |
| Pulmonary function with respiratory muscle testing | Neurogenetic | Maximal inspiratory and expiratory pressures and supine vital capacity, which most routine PFT labs omit. |
| Ambulatory ECG and event monitoring | Comprehensive genetic risk, transthyretin amyloidosis, connective tissue | Duration chosen for the question; a direct-to-patient cash price. |
| Gastric emptying, anorectal manometry, esophageal manometry | Connective tissue, nonspecific symptoms | Ordered only when the AGA criteria call for it; a center that takes an outside referral. |
| Muscle biopsy | Neurogenetic | Only after sequencing is uninformative; a surgeon and a lab that handle mitochondrial studies. |
Vetting criteria
Every entry is checked against the same four criteria before listing and reviewed yearly.
- Performs the study as requested, including the specific measurements above, and says up front if it can't.
- A physician reader in the relevant specialty, with a written report to the ordering physician that answers the question asked.
- Publishes or quotes a cash price before the study, and gives the patient the report.
- Takes a referral from an independent practice without requiring a system affiliation or a prior specialist visit.
How the roster is built
- Year one: for each study above, find at least one Colorado center or practice that meets the criteria. Autonomic testing and skin biopsy are the hard ones, so they come first.
- Year two: a second entry for each study, and centers in the other states where members practice. Agree on a one-page request sheet per study that states the measurements wanted.
- Year three: track turnaround, price and whether the report answered the question. Prune and add.
Roster
Forming. Members propose centers in the cohort channel with the "Vouch a provider" form; the convener and one member check the criteria before listing. Each entry will show the center or practice, the studies it covers, the cash price or how to get a quote, turnaround, and the member who vouches.