General: Guideline for Referring Patients to Expert Centers

About the Guideline

This new guideline was developed in collaboration with:

• Guideline for referring patients with neuromuscular diseases to neuromuscular expert centers (nmz) in university medical centers (UMCs)
• Version April 2018, created by Spierziekten Centrum Nederland and Spierziekten Nederland

Diagnostic Phase

General Neuromuscular Diseases (Nmz)

• Patients suspected of having a neuromuscular disease can be referred for diagnostics or a second opinion to any neuromuscular expert center in UMCs.*
• All children suspected of having a neuromuscular disease must be evaluated at least once by a (pediatric) neurologist or pediatrician in a UMC neuromuscular expert center.
• If a patient is already known at one nmz expert center, referral to another nmz center should preferably occur in consultation with the neuromuscular specialist (pediatric) neurologist from the original center.
• Depending on the condition and in agreement with the patient, nmz patients are either monitored by the UMC expert center or referred back to the neurologist from the referring center, general practitioner, or rehabilitation physician.

Diagnosis-Specific**

• If a specific expert center exists for the patient’s diagnosis, the patient will be informed. They will also be offered the option to be referred there for a (one-time) consultation.*

Treatment and Care Phase

General Neuromuscular Diseases (Nmz)

• Nmz patients can consult any nmz expert center for specific medical care needs or new neuromuscular complaints.*
• In consultation with the nmz center, nmz patients can remain under low-frequency follow-up (e.g., every three to five years) at any nmz expert center. This depends on the diagnosis, expected disease progression, and the patient’s needs.

Diagnosis-Specific**

• If a specific expert center exists for the patient’s diagnosis, the patient will be informed. They will also be offered the option to be referred there for a (one-time) consultation.
• Certain diagnosis-specific expert centers offer ongoing follow-up for patients with the respective diagnosis (e.g., annually). The frequency depends on the diagnosis, expected disease progression, and the patient’s needs.

Notes

• Patients with small fiber neuropathy can only be referred after consultation with a neurologist.
• Diagnosis-specific expert centers (and information about available care) can be found in the Zorgwijzer of Spierziekten Nederland.