ALS/MND Natural History Study Data Repository

Launched by MASSACHUSETTS GENERAL HOSPITAL · Jul 20, 2023

Keywords

ClinConnect Summary

The ALS/MND Natural History Study Data Repository is a research project aimed at better understanding ALS (Amyotrophic Lateral Sclerosis) and other motor neuron diseases like Progressive Muscular Atrophy and Kennedy Disease. This study collects important information from patients who visit participating clinics, including their medical history, symptoms, and family background. By gathering this data, researchers hope to learn more about how these diseases progress over time. The information is collected using a secure platform called NeuroBANK, and personal details are removed to protect participants' privacy before sharing the data with other researchers.

If you or a loved one has been diagnosed with ALS or any other motor neuron disorder and is between the ages of 65 and 87, you may be eligible to participate in this study. Participation involves attending clinic visits where healthcare providers will gather information about your condition. By joining this study, you contribute to valuable research that may help improve the understanding and treatment of these challenging diseases. Participation is voluntary, and your involvement could make a difference for future patients.

Gender

ALL

Eligibility criteria

• Inclusion Criteria:
• • A clinical diagnosis of El Escorial of suspected, possible, probable, or definite ALS or
• • Other motor neuron disorders, including but not limited to Spinal-Bulbar Muscular Atrophy (SBMA, Kennedy's disease), Spinal Muscular Atrophy (SMA), Primary Lateral Sclerosis (PLS), Progressive Muscular Atrophy (PMA), and Progressive Bulbar Palsy (PBP)
• Exclusion Criteria:
• • Disease does not meet criteria for any motor neuron disorder