The Undiagnosed Diseases Network (UDN)

The UDN is a research study funded by the National Institutes of Health Common Fund. The UDN is made up of clinical and research centers across the United States working to improve diagnosis and care of patients with undiagnosed diseases

The UDN has two main goals:
1) To provide answers for patients and families affected by mysterious conditions
2) To learn more about rare and common diseases.

PicnicHealth

PicnicHealth gives you access to all of your medical records. As a benefit of participating in this study, you will have access to a PicnicHealth account for one year.

Your medical records are stored with your health care providers. PicnicHealth will track down and retrieve your records so they are digitally stored in one secure place.

You have full control over your records. You can provide access to your family or doctors.

Participate

1) You first sign an e-authorization that enables PicnicHealth to track down medical records on your behalf

2) Then you list the names of doctors and/or hospitals that you have seen

3) PicnicHealth takes over from here. This includes sending request for records, following up, and creating your personal medical timeline

4) PicnicHealth will contact you by email to let you know when your medical records are ready for you to view.

FAQs

What is the relationship between UDN and PicnicHealth?

UDN selected PicnicHealth as a partner to collect medical records for study participants.

Is there a cost to participating?

There is no cost to participate. You will receive access to PicnicHealth's service for collecting and managing your medical records free of charge for one year.

How will PicnicHealth know where to get my medical records?

When you sign up, you will list the names of doctors and/or hospitals.

What if I can't remember the names of my doctors?

No problem. Just tell us what you remember. The doctor name is ideal, but just the hospital name and department (e.g., oncology at Mt. Sinai) is usually enough.

How will my doctor know it's okay to give my medical records to PicnicHealth?

When you sign up, you will see a medical record release authorization form that you can e-sign directly on your computer. This allows PicnicHealth to request records on your behalf.

How long will it take to get my medical records?

It usually takes a month for PicnicHealth to retrieve all your medical records. It depends on how quickly your doctors respond to record requests. In many cases, the process can go much faster.

What records will you collect?

For this study, PicnicHealth will collect your complete medical history.

How will UDN get my records for the study?

During the informed consent process, you will have the opportunity to allow PicnicHealth to share your medical records with UDN.

What happens to my records after the study? Can I still access them?

Your records will be available for you to access through PicnicHealth for a minimum of one year after the end of the study. You can choose to independently extend your PicnicHealth account after that time. You can also request to have your records destroyed by PicnicHealth at any time.

Improving rare disease research together