CRAMP for Rare Neuromuscular Diseases: Fully Renewed
National patient databases can yield vital insights, particularly for rare conditions. This is especially true for the newly revamped CRAMP database for rare neuromuscular diseases, which will go live in January. Three key contributors explain its significance, emphasizing the importance of understanding which patients exist and where they are treated.
The Computer Registry of All Myopathies and Polyneuropathies (CRAMP) was originally established in 2004 by the Dutch Center for Neuromuscular Diseases (NL-NMD) for university medical centers (UMCs). At that time, the database was cumbersome, as noted by Jan Verschuuren, Head of Neurology at LUMC, who was closely involved in its early days. “Back then, it was maintained on a standalone computer. Twice a year, you had to upload files from your PC to a central location, and the totals were compiled manually. Its completeness depended heavily on the motivation of individual doctors. Other specialties rarely contributed, leaving significant gaps.”
Esther Brusse, a neurologist at Erasmus MC and chair of NL-NMD, recalls similar challenges. “Back then, we had paper files, and you had to physically stamp the dossier to mark it for CRAMP inclusion. If you forgot, that patient would never be registered.”
Several years ago, the idea to modernize CRAMP took shape, resulting in the first digital iteration developed by DHD. The database began pulling data directly from the Landelijke Basisregistratie Ziekenhuiszorg (LBZ), eliminating reliance on individual doctors’ motivation and time. Additionally, the system began using the Diagnosethesaurus, enabling automated translation into ICD-10 codes and DBC classifications. For clinicians, this made data entry feel almost automated.
The Newest Version
In January 2024, the latest version of CRAMP was launched. It addresses key issues by ensuring that patients treated at multiple hospitals are counted only once, creating a more accurate picture of the patient population. The upgrade also includes technical enhancements for easier future expansions and improved usability.
According to Brusse, this fulfills CRAMP’s long-awaited promise. “Now, we can clearly see who the patients with neuromuscular diseases are and where they are treated. This nationwide perspective is crucial for demonstrating the prevalence of certain diseases, which can highlight unmet needs and help justify new treatments. For instance, we can show that a condition isn’t as rare as previously thought, emphasizing the importance of helping these patient groups.”
National Insights Matter
Simone van den Berge, research coordinator at the Prinses Beatrix Spierfonds, which funds CRAMP, underscores the value of national data. “This overview is essential for patients, ensuring they can be located when needed, as was evident during the COVID-19 vaccination campaigns. For caregivers, particularly for very rare diseases, it facilitates networking and collaboration. Knowing where similar cases are treated can spark inter-hospital connections.”
CRAMP’s data will also support the Prinses Beatrix Spierfonds in advocacy and communication. Reliable statistics will allow analyses of trends and reveal gaps, such as missed diagnoses in certain regions. Furthermore, accurate numbers make it easier to communicate the scope of specific conditions to the public.
Improving Visibility and Care
Brusse notes that the new version allows more advanced search functionalities, including filtering by diagnosis code or patient age. This is crucial for identifying patterns, such as conditions being underdiagnosed in specific areas, and for showcasing a center’s expertise.
Verschuuren adds that this level of visibility can influence policy and funding decisions. For instance, when horizon scans for costly new therapies are conducted, robust patient data is critical for estimating future costs.
Looking Ahead to 2030
Looking to the future, Verschuuren hopes for broader participation beyond UMCs to include all healthcare providers treating neuromuscular diseases, aiming for 95% national coverage. Brusse envisions patients having access to their own data via personal health environments (PGOs), with the ability to link these to CRAMP.
Van den Berge dreams of achieving a level of insight comparable to that of the Dutch Comprehensive Cancer Center (IKNL). “Good registration and a baseline measurement are the first steps. Over time, we hope to uncover blind spots and draw meaningful conclusions. To sustain this progress, it’s crucial to keep CRAMP evolving and expanding.”
