# ASMD Accelerate

**Your child's medical records can contribute to ASMD research**

Wylder Nation Foundation and PicnicHealth are working together to advance ASMD (Acid Sphingomyelinase Deficiency) research. PicnicHealth’s innovative research combines de-identified medical record data from volunteers, so Wylder Nation Foundation and other researchers can understand how ASMD progresses over time, as well as how the disease is actually managed and treated in the real-world. We hope this will lead to better care, a better understanding of the disease, and ultimately new treatments.

ASMD Accelerate is initially focused on two specific types of ASMD associated with some form of neurological involvement; we are now including all three types of ASMD

1) Infantile Neurovisceral ASMD (Niemann-Pick Disease Type A)

2) Chronic Neurovisceral ASMD (Niemann-Pick Disease Type A/B)

3) Chronic Visceral ASMD (Niemann-Pick Type B)

## How it works

PicnicHealth does the hard work of collecting, digitizing, and encrypting all your child’s records, so you can see your child’s complete medical history in one click—and contribute to research from the comfort of home.

1. **Sign-up in minutes**  
Create a PicnicHealth account, consent, and share the names of your child’s doctors in 10 minutes.

2. **We collect your child's records**  
PicnicHealth compiles medical records for your child, and anonymizes them for research.

3. **Advance medicine**  
Researchers use anonymized info from a cohort of ASMD patients to make new discoveries.

## Why should you enroll in the ASMD Accelerate study?

**Impact**  
Historically, the natural history of ASMD has been difficult to study and has required traveling to centers of excellence to participate in research. With this study, data from your child’s medical records can be used by researchers to learn about what it is like to have ASMD in the real-world.

**Importance**  
Understanding the holistic impact of ASMD is critical to advancing research. Real-world evidence from medical records can be essential before launching a clinical trial, as a control-arm in research, determining efficacy, and ultimately approving an experimental treatment.

**Ease**  
Contribute to research without leaving your home. No extra treatments, no extra visits, no experiments.

**Better care**  
If your child is still on their medical journey, ASMD Accelerate can help you better manage their care by centralizing medical records so you and doctors can make the most informed decisions.

**Legacy**  
If your child has passed away, their medical journey can provide valuable insights to researchers and clinicians. Enroll in ASMD Accelerate to carry on their legacy while accelerating ASMD research and improving outcomes for other families.

Collecting and collating medical records on patients with ultra rare diseases such as ASMD presents unique challenges, particularly since the diagnostic journey for these patients can often take many years and the medical records are often disseminated among the many physicians who have been involved along the way. This project supported by Wylder Nation in collaboration with Picnic Health is an incredibly important step to overcoming this barrier – this type of real world, medical information has never been collected and assembled for ASMD, and will be an invaluable resource to better understand this disease and to provide baseline data for future clinical trials.

Dr. Edward H. Schuchman  
Department of Genetics & Genomic Sciences, Mount Sinai School of Medicine

## Your privacy is our top priority

**Privacy**  
PicnicHealth and Wylder Nation won’t share you or your child's personal information. And no information is shared without your consent first. All medical information is de-identified before sharing with other researchers.

**Security**  
PicnicHealth puts security first. We protect your child's information with end-to-end encryption and use HIPAA compliant practices.

**Checks and balances**  
PicnicHealth uses an independent third party (Institutional Review Board) as an external check to make sure our practices are always ethical.

## Get all of your child’s records in one place

**See what your doctor sees**  
For those still managing their child’s care, stay informed about your child’s health. When you have access to your child’s full history, you can make the best decisions about their care.

**Portable and shareable**  
Access your child’s records from anywhere. Share your child’s full medical history—including scans and imaging—instantly with your family or doctors.

**Totally free**  
For those still managing their child’s care, by participating in ASMD Accelerate, we’ll collect and organize your child’s complete medical history for free.

When it comes to promoting research and developing treatments, there is no more important asset for a rare disease community than patient data. ASMD Accelerate provides the ASMD community with an easy opportunity to contribute to important research while creating a comprehensive personal electronic health record for each participant at no cost. It is WIN-WIN for free!

Dr. Justin Hopkin  
Chief of Hospital Medicine at the University of Rochester School of Medicine, Board Chair of National Niemann Pick Disease Foundation, ASMD Parent

## Frequently Asked Questions

### How long will it take to get my child’s medical records?
It takes about 4 weeks to retrieve most historical medical records. After that, it can take another couple of months for us to track down the oldest and trickiest records to access. The timing depends on how quickly your child’s doctors respond to PicnicHealth's requests for records.

### What does PicnicHealth do?
PicnicHealth works directly with people like you or your child to help collect and manage medical records. That means going out and collecting all of your medical records from different doctors and keeping them up-to-date over time. PicnicHealth will then transform the records into a timeline that makes it easier to find what you’re looking for. When you see the doctor again, PicnicHealth will update the timeline with new records. You can access your PicnicHealth timeline from anywhere and even share it with your doctors with a few clicks.

### Who can join this study?
You or your child can join this study if you have been diagnosed with an acid sphingomyelinase deficiency (ASMD), have received medical care in an English speaking country, and copies of the medical records still exist. People of all ages can join, with parents or legally authorized representatives able to enroll children, including those who have passed away. The study is currently focusing on the following types of ASMD:

- Infantile Neurovisceral ASMD (Niemann-Pick Type A)
- Chronic Neurovisceral ASMD (Niemann-Pick Type A/B)